More stories of family’s like our’s that their lives have been forever change by this disease, (HLH) Hemophagocytic Lymphohistiocytosis. Please share this page with others to help raise awareness about HLH, you could save a life.
Princess Miabelle’s Journey http://miabellegillier.blogspot.com/
Monday, January 9, 2012 – Post from Miabelle’s Blog
Today marks the one year anniversary of this crazy journey. What began with a little diarrhea turned into our worst nightmare. It seemed innocent enough. New place, new food, warm climate, sea water…..maybe a stomach bug, nothing to worry about. As the days passed and the diarrhea turned to dehydration and fever, concern began to grow but nothing could have prepared us for what was to come.
To read the full post or daily updates click on the link below
Source: Click here: miabelle and noelie
Deakon’s Journey – HLH & Leukemia Survivor
6 years ago today our lives fell apart when our 12 day old baby boy was rushed in an ambulance to MCH needing blood and platelets (platelet count of 2). For 9 months we lived at the hospital with him while he underwent grulling tests, operations, treatments and chemo suffering side effects that are too graphic to share. He fought back from the very edge of death 6 times, once after been given jus…t hours to live and once after we were told nothing more could be done for him and doctors discussed with us how they would make him comfortable while he died. After many infections, being at risk of a heart attack and constant internal bleeding Deakon had a BMT which became complicated and lead to his lungs and heart beginning to fail. Poorly liver, spleen and kidneys and skin that would rip open if he moved. He spent time in HDU and ICU on 2 ventilators at a time. When he finally made it home he was in isolation and needed hours of physio and many other follow up treatments. Today he continues to bring hope to others, he is loved by so many and has touched so many. He brings so much joy and love into our lives, we would not be complete without him. Our little hero, our inspiration, we will love you be proud of you and fight for you forever! Our little Deaky poohs ♥♥♥♥♥
Hannah Marsh’s Story
Hannah Marsh . . . SURVIVOR of HLH
Uploaded by KelBelleFL on Mar 12, 2010 http://youtu.be/A0I48X6YrDI
For any of you battling Hemophagocytic Lymphohistiocytosis HLH, there is hope. . . our daughter is living proof. We finally see the light at the end of the tunnel and it’s shining so bright! Never, never, never give up HOPE!
A smiling Marsh family includes Hannah and her parents, Kelly and Bill. Hannah was out of the hospital after months of care and after a stem cell donor match was found. Amazingly, there was no match among the 10 million registered donors in the U.S. Hannah’s donor was a German man who matched her perfect match.
HLH Support Group on Facebook – Created By: Kelly Marsh
HLH Survivors If you have a child that is an HLH survivor, or if you are an HLH Survivor yourself, then you have come to the right place. You might have also found your way here looking for HOPE.
Email - HLHSurvivors@groups.facebook.com
Liam Christopher Schulze (1-2-08 to 9-9-09)
Welcome to liam’s lighthouse foundation! My name is Michelle Schulze and I am the proud mother of baby angel Liam Schulze. I am originally from Northeast Pennsylvania and graduated with a Master’s Degree in physical therapy from Misericordia University. I started liam’s lighthouse foundation because my son has inspired me to make a difference in the world of Histiocytosis and continue the fight he no longer could against this horrific disease. The harsh reality is that most physicians are not familiar with HLH (Hemophagocytic Lymphohistiocytosis), many of which have never even heard of the disease. HLH is going undiagnosed or misdiagnosed, and many children have died before a diagnosis could be made due to its rapid, fatal nature. Educating the community and our primary care medical professionals is mandatory so this disease can be identified earlier and a cure can be found. Parents are their children’s best advocates and are part of the team to provide our children the best possible chance for early detection and survival.
liam’s lighthouse foundation, a non-profit, tax-exempt organization, was established to create and provide educational material and awareness about Hemophagocytic Lymphohistiocytosis (HLH) including Histiocytic Disorders, and to distribute unbiased, factual information to physicians, hospitals, and the community regarding this disease. Our focus is also to bring families affected by HLH/Histiocytosis together and offer support through a variety of resources. We aim at raising much needed funds for continued education of physicians and research to develop safer and more effective treatment methods and ultimately a cure. LLF is also dedicated to bring awareness to the community about the importance of becoming a blood and bone marrow donor.
Liam’s Lighthouse Foundation Blog: http://liamslighthousefoundation.blogspot.com/
Histiocytosis on The Today Show (Liam’s Lighthouse Foundation for Rare Disease Day)
2 min – Feb 28, 2011 – Uploaded by geneseelovewww.youtube.com/watch?v=ia5r8T2cBms
CaringBridge / Megan Foster / Welcome
CaringBridge / Alexandra Margaritis / Journal
Matthew and Andrew’s Story
Andrew Preston Akin was born on June 5, 2007. At 10 weeks old, he became very sick and almost died from liver failure. We soon learned that the cause was an immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH). The only cure for this disease is a bone marrow transplant.
Andrew underwent his first bone marrow transplant with umbilical cord cells in December 2007 at St. Louis Children’s Hospital. Sadly, this transplant did not work and Andrew needed a second transplant to try and save his life.
In May 2008, Andrew had his second bone marrow transplant, this time using bone marrow from an anonymous donor. Unfortunately, this transplant did not work either, and at this point, we decided to transfer his care to Cincinnati Children’s Hospital Medical Center (CCHMC) to be under the care of the world-renowned HLH expert, Dr. Lisa Filipovich.
Andrew underwent his third and final bone marrow transplant in March 2009. Upon transferring our care to CCHMC, additional tests were done on Andrew, and it was learned that the cause of his HLH was from a very rare genetic mutation: X-linked Lymphoproliferative disorder #2 (XLP-2).
On the recommendation of the doctors, we had our other son Matthew tested despite the fact that he was a healthy 4-year-old. Just when we thought things couldn’t get worse, we were told that Matthew also carried the mutation, and it would be a matter of time before he was exposed to a virus that would trigger HLH.
To read the full story click on the link below:
Colt’s HLH Journey
Another HLH Warrior in need of Prayers, Colt has to have a 2nd Bone Transplant July 3, 2011 to read about Colt’s Journey go to www.coltfuhrman.com/colt-updates.html
Colt is doing great now, you can follow is mom’s blog @ http://fuhrman2012.blogspot.com/
Kizoa slideshow: transplant journey – Slideshow
CaringBridge / Ryan Davis / My HLH Story
Ryan had HLH, and… had his BMT on July 29th, 2011
Support for Sammie
Green Bay -There are smiles all around knowing 3-year-old Mira Erdmann is back in her own home. She suffers from a rare auto-immune disorder (HLH), affecting only one in 1.2 million people. It leaves her body defenseless against bacteria and viruses. As Mira’s father pulls the van into their driveway, there are cheers.It is a moment eight months in the making. “Hello, beautiful!” says her mom and grandma.
Mira Erdmann finally is home, thrilled to reunite with her twin brother and older sister, who she hasn’t been able to hug since she left for her bone marrow transplant at Cincinnati Children’s Hospital November first. Watching her, with all her energy and enthusiasm, you’d never guess how hard she’s had to fight to overcome her rare auto-immune disorder (HLH)– or how close she came to losing that battle. We talked with her via Skype from the hospital in December, the day before she received her transplant. It was a success, but then came several months of complications, where many of Mira’s organs started to shut down. She needed heart surgery, and she coded twice. At one point, doctors gave her a five percent chance of living. Then, as her family says, Mira performed a miracle. Her dad put together a video of the new and improved Mira, showing the fighter coming back out as her medications started working, her body began accepting her donor cells, and her hair even started growing again. It’s all thanks to an anonymous donor in Germany, who wrote a letter to the Erdmanns this week, saying he joined the registry because of a sick friend. Even though Mira’s home now, her immune system is still fragile and she can’t be around many people.
Her family knows she has a long way to go, but right now they’re happy to celebrate just how far she’s come.
CaringBridge / Liam Silva / My HLH Story
Denke Family Holds Fast to Hope
Ten month old Sherman Oaks twin brothers, Keane and Ethan fight fatal disease to save their lives. http://www.dkmsamericas.org/denke-family-holds-fast-hope
The Generations Project – Xander and Carrie Denke, whose twin boys (were diagnosed with a rare blood disorder Hemophagocytic Lymphohistiocytosis-HLH) were saved from a genetic disease by an anonymous bone-marrow donor, set out to test the relationship between genetic and genealogical ancestry while searching for the disease in their own family history. Click on the link below to watch the video about thier journey with HLH.
This is the Denke family now, the boys are doing amazing.
Ashtyn Carrier’s Story – HLH, Cincinnati Childrens Hospital
Uploaded by CincinnatiChildrens on Sep 1, 2010
Ashtyn Carrier was 7 when she was diagnosed with a rare and almost unpronounceable immune-system disorder called Hemophagocytic Lymphohistiocytosis, better known as HLH. She and her family moved all the way from Minnesota so she could receive expert treatment at Cincinnati Children’s. She received a successful bone-marrow transplant in August. In this “Tell Me a Story,” Ashtyn and her dad talk about their experience leading up to the transplant.
CaringBridge / Addyn Thompson / Welcome
Jillian Elizabeth Blais, 19, of Samsula, passed away on Wednesday, July 18, 2012 at Cincinnati Children’s Hospital from post-bone marrow transplant complications. Jillian suffered from HLH (hemophagocytic lymphohistiocytosis). Jillian was a 2011 graduate and class salutatorian of Father Lopez Catholic High School. She excelled academically in all areas, earning top honors in her classes, and was a member and leader of numerous academic clubs and associations. She was also a four-year varsity cheerleader for Father Lopez. Jillian had been accepted to the University of Florida and would have started in the fall of 2011. A third generation native of the Daytona Beach area, Jillian attended Samsula Elementary and Creekside Middle, participated in 4-H, and was interested in arts, computers, Disney cosplaying, animals, and theater. She will always be remembered for her joie de vivre, exceptional personality, her drive, her persistence, and her openness to help others. She impacted more lives in her 19 years than many people are privileged to do in a much longer lifetime. Jill is survived by her parents, Lisa and Joe Blais of Samsula; her sisters, Caitlin and Rebecca; grandparents Kathy and Joe Blais, and Sandy and Bob Lloyd; and many aunts, uncles, and cousins. The family would like to thank all of their family, friends, and acquaintances for the incredible support they have received through this past year. The family would also like to recognize the excellent care Jillian received at Cincinnati Children’s Hospital. A Mass of Christian Burial will be held on Saturday, July 28, at 10:00AM at Sacred Heart Catholic Church in New Smyrna Beach. In lieu of flowers, donations may be made to the Jillian Elizabeth Blais Memorial Scholarship at Father Lopez Catholic High School, 3918 LPGA Boulevard, Daytona Beach, FL 32124. Condolences may be shared with the family online at www.lohmanfuneralhomes.com Arrangements are under the careful direction of Baggett and Summers Funeral Home.
CaringBridge / Ally Jark / My HLH Story
CaringBridge / Brayton Martin / My HLH Story
Brayton came down with a cold at 7 weeks of age and was taken to his pediatrician twice in that week. We were told he had a common cold and it needed to run its course. Brayton was not improving and we were becoming very concerned.
On January 28th, 2009 Brayton was taken to the emergency room of the Lancaster General Hospitalwith a high fever and suspicious red spots on his torso and head. From that visit, the nightmare began and Brayton began the fight for his life.
The doctors quickly realized that Brayton was seriously ill and requested a team of doctors from Dupont Children’s Hospital in Wilmington, DE come and take Brayton to their facility. At duPont Children’s, numerous tests were conducted and they suspected our baby Brayton had Leukemia, a serious infection or was in liver failure. It was soon discovered, Brayton did not have Leukemia but instead he had a rare disorder of the immune system known as Hemophagocytic Lymphohistiocytosis (HLH). HLH affects one out of every one million newborn children. We decide to have Brayton’s care transferred from Dupont Children’s to Cincinnati Children’s hospital inCincinnati, OH where the doctors are more familiar with this rare disease.
CaringBridge / Jordan Crowe / My HLH Story
Jordan is a bright and loving boy who constantly brightens up the lives of those around him. He was born on March 22nd 2005 and has a younger brother, Jaxon. He was diagnosed with the genetic/Fam
He’s currently enjoying being a Kindergarte
Bobby Dietzman III Memorial – HLH & FHL
Brendan Ervin’s Story
Molly Berger Tribute (HLH Patient)
Uploaded by wassupman911 on Jul 10, 2011
Molly was a very dear and close friend alot of people she always loved and helped everyone but this past may she past away strongly with a really rare blood dieses commonly called hlh what it does is it mass multiplus you blood cells and bone marrow and basicaly eats you alive but she fought hard but god must have wanted her back.. you be forever loved molly i love you soo much and see you soon angel fly high
Ryan Cano’s Story
Tristan’s Story – Backstory from Birth to Diagnosis
Caleb’s Crusaders Foundation – Helping to Raise Awareness of HLH
Hemophagocytic Lymphohistiocytosis (HLH) – Levi’s Story
Sunman mother works through her grief to help others
Benefit for HLH research set for Dec. 12, 2007 at Milan VFW
Wanda English Burnett, Editor
Facing the holidays without her son is something a Sunman mother hoped would never happen. But it did. A rare disease, Hemophagocytic Lympho Histiocytosis, (HLH) ravaged David Madison’s 17-year-old body last Thanksgiving and claimed his life just months later on March 31.
Youngster doing well living with genetic disease HLH
MARLBORO — As rare as hemo-phagocytic lymphohistiocytosis (HLH) is, Shirley Zhang, 6, of Marlboro, who died in January, was not alone in her fate, even in the township. In 2002, the News Transcript profiled the story of Marc Weinstein, 4, and Ross Weinstein, 2, of Marlboro, who were diagnosed with familial [genetic] HLH.
After receiving the diagnosis on their sons, Barry and Cindy Weinstein’s lives were put on hold as they dealt with the task of traveling back and forth between their home and a hospital in Cincinnati, Ohio, large medical bills and the news that even following successful treatment, Marc and Ross would have to be separated for up to three years to avoid any chance of infecting each other.
HLH/Transplant journry of my 2 sons – Hemophagocytic Lymphohistiocytosis
Uploaded by Nanette576 on Sep 2, 2010
yes both of my sons have HLH an it is a horrible disease they have both had transplants now and are both doing amazing now.
CaringBridge / Maya Chamberlin / Welcome
Maya’s Mom: Cherishing The ‘Well’ Moments – HLH
Host Liane Hansen talks with Dr. Mina Chamberlin — mother of 5-year-old Maya Chamberlin, who recently underwent a second bone marrow transplant. Maya was the focus of a December Weekend Edition interview about the difficulties of finding mixed-race bone marrow donors.
Tαey`ziα Pye; H.L.H (rαre diseaαe) — 1 in 1 million people get
Ok , I know most of you hαve heαrd about Tαey`ziα Kαtrelle Kishαwn-Ross Pye ( Son of Kierrα Pye & Grαndson of Tinα Pye. If you hαven`t here`s the thing .He hαs α rαre diseαse thαt`s cαlled H.L.H.(Hemophagocytic lymphohistiocytosis)What is hemophagocytic lymphohistiocytosis?
Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder primarily affecting young children at a very early age, but it is… found in patients of all ages.
Esme Carter – About our beautiful daughter…
In May 2010 after weeks and months of terrible fevers and numerous trips to the doctors and various hospitals our daughter, Esme or Bubby as we called her, was finally diagnosed with the disease Haemophagocytic lymphohistiocytosis or HLH.
While Bubby was brave, she also was fragile and sensitive to the harsh drugs and her rampant disease. Bubby’s little body couldn’t tolerate the chemo conditioning and after her transplant she spent four days in Intensive Care. She was on maximum life support until she deteriorated so much that doctors told us it was futile to continue. They turned off her life support in the early hours of 15th July 2010 with her mummy and daddy holding her hands reading her favourite book.
In April 2011 – 7 months after her death – Jason and I requested that GOSH carry out further tests. It was then discovered that Bubby had been suffering from Visceral Leishmaniasis a sandfly disease. She must have been bitten by an infected sandfly in either in Spain or Crete in the summer of 2009. So we now know, if she had HLH at all, it was secondary to Leishmaniasis.
Elyse Yu – HLH Angel
This website is dedicated to our precious daughter Elyse, born the eldest of triplet sisters. She came into our lives on February 1, 2007 and touched the hearts of people around the world before being called back to our heavenly father on October 6, 2007. She inspired many people during her 8 months of life. She fought with the heart of a warrior princess, but lost the fight to HLH, a rare blood disorder 18 days into her bone marrow transplant. We ask visitors to this site to honor her memory by becoming a bone marrow donor and by donating blood and platelets whenever possible. We would also like to share the Good News of Jesus Christ through this site.
Maya Gordon HLH Story
WELCOME TO MAYA’S PLACE
Maya’s transplant took place April 30th. Things are looking up! Cells are developing & her immune system is building. She is fighting hard. Thank you, thank you, thank you to the wonderful donor. GOD BLESS YOU – WHOEVER YOU ARE!!!!
It has been a difficult 8 months and Maya has a long journey still ahead of her. She is so BLESSED that a donor was found so quickly. She is a strong warrior and she WILL beat this awful disease. We know many of you would like to see Maya, however, she will be in isolation for awhile.
You can follow Maya’s journey at her Carepage.
The New Jersey Herald article about Maya can be found at the following link:
Update on Maya – August 2012: she is going to undergo a 2nd BMT, please keep her and her family in your prayers.
My Journey Through HLH
After 3 IVF cycles, 2 surgeries, and an ectopic pregnancy, my husband and I were anxiously awaiting the birth of our son on January 29, 2010. However, on December 27th we took my 11 year old son to the hospital after a few days of unexplained fevers. On December 29th my son Julian was placed on life support. On December 30th I delived a premature baby. Julian was diagnosed with HLH diagnosis and so with that I begin this blog about my journey through this very painful illness.
Our Cincinnati Journey..Kaelin’s fight for HLH!!
Here is a quick overview about why Kaelin and I are here. As most of you know, Kaelin has been very sick about once a year, the last three years for about 10 days with jaudice, swollen liver and spleen, incredible headache, and a very high fever. As you can imagine its very hard to see your child this sick and in pain. All of these symptoms relate to many things which made it hard to diagnose. We have talked to many doctors and Kaelin has had hundreds of tests throughout all of this time. The doctors finally got on the right track, pointing us in the direction of HLH, but it was never officially confirmed to us. We decided that we should take Kaelin somewhere else to have some final answers. Thanks to Brad for finding Dr. Filipovich in Cincinnati and being able to take Kaelin for an appointment to see her. She was able to prove and officially diagnose Kaelin with a genetic form of HLH in April, which requires some chemotherapy for 2 weeks and a Bone Marrow Transplant.
Just a Journey – Dana Story
Uploaded by zeLcsky813 on Nov 17, 2010
An 8 year old girl who was diagnosed with a rare autoimmune disorder called Hemophagocytic Lymphohistiocytosis (HLH). Join her in this short clip and witness her strength in winning this battle.
CaringBridge / Gabrielle Wedeking / My Story
Even a father’s love is not always enough… Gabrielle, born in September 2006, was diagnosed with hemophagocytic lymphohisitiocytosis (HLH) at four weeks old. HLH is a rare, life-threatening disorder of the immune system. The only known cure for HLH is a stem cell transplant. Gabrielle’s parents, Natalie and Will, were devastated by their baby’s illness and soon learned that they had to move to Cincinnati Children’s Hospital for a lengthy period of time for their daughter to receive a lifesaving stem cell transplant. Gabrielle was flown from her small farming community in Iowa to Ohio for her treatment in December 2006. She was hospitalized for over eight months, the majority of her life. Gabrielle’s four year old sister, Abigayle, was her donor and constantly traveled back and forth between Iowa and Ohio for medical visits. Between clinic visits, hospitalization, multiple medications and the gap in medical insurance coverage, the family’s expenses soared as their budget stretched beyond its limits. With neither parent able to work, their home town community (of fewer than 330 people) rallied to help with the catastrophic costs associated with the transplant, but that too was not enough. Gabrielle’s parents were relieved that The Bone Marrow Foundation was there to help with the overwhelming costs associated with caring for a sick child far from home.
Jonah Nathan Chuang: An Infant in Need of a Bone Marrow Transplant
Jonah was born to us a full term healthy 8 pound baby boy on August 2, 2007. We were so happy to have him home – the result of many prayers and medical help since we had great difficulty conceiving him. He was doing well at home until he developed a fever on August 25. His 3 year old brother, Ethan, had caught a cold in daycare, and we thought that was all it was going to be.
Daniel Connacher’s Story
This memorial website was created in the memory of our beautiful son, brother, nephew, grandson and hero Daniel Connacher who was born in United Kingdom on July 13, 1993 and passed away on September 09, 2006 at the age of 13. We will love and miss him forever.
He became ill the first week in June. Our GP said he had tonsilitis and he was given a course of antibiotics.. Over the next couple of weeks Daniel was still feeling unwell with fevers and high tempratures..GP said it was a virus..
Six weeks later Daniel collapsed and was finally admitted to hospital on the 17th July where he spent the next three weeks. On admission blood tests showed he had Epstein Barr Virus with spiking temps over 40.6. He was given paracetamol every four hours. He had swollen glands and Ultrasound scans showed his liver and spleen were also swollen.
Further tests showed his red blood cells were abnormal. We asked them to do a bone marrow biopsy /lymph node biopsy to find out what was wrong.. This was refused. They said there was no need to do this as they did not suspect he had cancer or leukemia..They said it was ‘only glandular fever’ and that we his parents were worrying too much.
CaringBridge / Preston Snead / My HLH Story
CaringBridge / Susie Paige / My Story
CaringBridge / Ethan Lee / My Story
CaringBridge.org – Kristan Grace
This video tells of the struggle of one family who learned their son had a rare disease. It is stories like these that inspire people to give, because it really does make a difference in people’s lives. The goal of the Histiocytosis Association’s Fundraising Program is to provide resources for the Association’s research program, member support programs, administrative and fundraising costs. This illness is so rare, there is little research into its cause and treatment, and it is considered an “orphan disease,” meaning it strikes too few people to generate government-supported research. Contact us at http://www.histio.org
CaringBridge / Scottie Macedo / My Story
CaringBridge / Dayne Belau / My Story
CaringBridge / Jacob Voisinet / My Story
Nevaeh Elizabeth Oswalt, age 8 ~ HLH Angel
~ Rest in Peace, sweet girl….
“At 2:07pm on August 5th, 2011, Jesus called his precious angel, Nevaeh Elizabeth Oswalt, to come home and live in Heaven free of HLH and all of her pain and suffering.”
by Angela ‘Dray’ Gideon
Baby Jaxon lost his fight with HLH. Please say a prayer for their family.
Rest in Peace Baby Jaxon.
Angel – Taylor M. Russell
In June 2008, Taylor was admitted to the hospital & diagnosised with Juvenile Rheaumatoid Arthirtis. After her initial diagnosis she was doing well. In Oct. 2008, she developed high fevers over 104 degrees, & was admitted to Hope Children’s Hosp. with possible pneumonia in her right lung. After several labs were run they revealed Tay’s liver enzymes were over 3000, when they should only be in the 20′s; her blood count was down & several things were wrong. She was transfered to Comer Children’s Hops. & clinically diagnosised with Macrophage Activation Syndrome (MAS) - a life threatening condition of special rheumatologic disorders. It’s a severe complication of childhood systemic inflammatory disorders”. She was discharged after 9 days.
On Dec. 30th, she was hospitalized again with high fevers over 104 degrees. She was discharged on Jan 6th. A 2nd opinion was sought at Children’s Memorial Hosp. on Feb. 11 & we were told she had 1 of 2 versions of MAS. Results showed she has the congenital strand which is fatal, & a Bone Marrow Transplant is needed to save her life.
Another classification for what she has is Hemophagocyctis Lymphohisyiocytosis (HLH), a rare disorder of the immune system primarily affecting young infants & children. HLH occurs either on the basis of a genetic defect or as a secondary form with underlying disease such as infections, cancer, or rheumatic diseases. In the primary form defectove genes are inhereted from both the mother and the father (autosomal recessive inheritance).
Sep 20, 2009 … A 20-year-old British girl, suffering from a rare blood disorder, hemophagocytic lymphohistiocytosis (HLH), since she was eight. A 20-year-old Died of internal bleeding following an accidental puncturing of her jugular vein. And there was a two-hour delay in blood transfusion. www.medindia.net/news/Miscued-Chemotherapy-Causes-Internal-Blee…
May 20, 2010 … Little Sophia Lopez suffers from hemophagocytic lymphohistiocytosis (HLH), a rare blood disease that’s found in only one in a million children …www.nbcnewyork.com/news/health/Help-Save-Baby-Sophia-94529884.h… – Similarto Help Save Baby Sophia | NBC New York
Help Save Baby Sophia and Others!
- Pelham Bay, Bronx, NY
On January 6, 2010, little Sophia Lopez of the Bronx was diagnosed with HLH, a rare blood disease. Sophia has already endured an unsuccessful round of chemotherapy, and now at just 6 months old, her only hope for survival is a bone marrow transplant from a donor. Her parents were devastated to learn that neither of her two brothers could be her lifesaving match, and now they must depend on a perfect stranger to save their daughter’s life. Finding an ideal bone marrow donor will be challenging; Sophia is of Puerto Rican descent, but Latinos make up just 10% of the national registry and are very genetically diverse.
3 year old fights fast-acting rare blood disease
A 3 year old boy is fighting for his life, battling a rare and sometimes fatal blood disease. Only two months ago Hayden McCuistion, 3, was just “like any typical little boy. He wants to play outside and go hunting with his dad,” said his aunt Shari Eder.
To follow Hayden’s progress click on this link to the family’s Facebook page. http://www.facebook.com/groups/239371779419337/?id=248595948496920¬if_t=group_activity
Hayden lost his battle with HLH. Please say a prayer for his family…
Noelle Victoria was welcomed to our loving arms 6 weeks early, on October 28th 2011 at 7:19 am. Within about an hour of her beautiful life, we were informed that there was something very wrong. After numerous tests and procedures over three weeks our Noelle was diagnosed with a very rare disease called HLH (Hemophagocytic Lymphohistiocytosis). From that point on, it was a rollercoaster of emotions, heartbreak, and setbacks. Our beautiful Sweet Pea was called to Heaven after a fierce fight for her life on her actual due date, which happened to also be St. Nicholas day~on December 6th 2011 at 12:50 am. Here is our story… http://noellesfight.org/Home.html
You Made the Diagnosis — HLH
High school student Amanda Weber was a typical teenager with many friends and hobbies. Though born hearing-impaired, Amanda was otherwise healthy her entire life.
“She’s just a healthy kid,” said Terry Weber, Amanda’s mother.
So, when Amanda came down with a cold one winter, her parents didn’t think much of it. It was cold and flu season after all, they thought, and it was probably just a typical bug. But by March, Amanda wasn’t any better — she was much worse. A trip to the family pediatrician revealed Amanda had mononucleosis.
The rash that doctors noticed in the ER had spread over most of Amanda’s body. And because her cell counts were very low, doctors began to consider cancer, or a disease called HLH.
In August 2011, Jaelynn was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a very rare disorder of the immune system primarily affecting young infants and children. This disorder causes the immune system to malfunction and attack the body.
- I am the mother of 4 AMAZING kids who have shown me what being strong truly means. This blog has turned into a diary of a life we could never have imagined we would be living. Our family has been through so much. My husband is in remission of stage 4 Hodgkin’s Lymphoma and is currently doing well but is at risk of developing HLH and other cancers due to an NK Cell Deficiency. There are many ups and downs and constant chaos in our home. We are also living with the effects of a progressive genetic disease(mito) that affects all of our children as well as the possibility that they will also develop HLH. Our youngest child Brent just flew home to heaven due to complications of Familial Hemophagocytic Lymphohistiocytosis(HLH) on March 9th, 2012. Our hearts are broken yet we are thankful he is suffering no more. Even though there are many tough times,we are always surrounded by enough LOVE and LAUGHTER to smile through the tears.
Rocco Buzzeo- (HLH) Update & Support Page – Info | Facebook
This page was to keep everyone updated on Rocco Buzzeo’s health crisis and to support him & his family during this challenging time.
My name is Rocco Buzzeo i was Born 03/29/99 healthy 6 pound and 12 oz. Our Family’s journey began in April 29,2011, I was diagnosed with (HLH)-Hemophagocytic Lymphohistiocytosis, In Yale New Haven Hospital, I have undergone my initial 8 wks of treatment there no improvement so on June 28,2011, I was transported to Cincinnati Children’s Hospital for treatments.On Aug.30,2011 I will begin the preparative regimen will consist of 5 days Campath-1H 0.2mg/kg IV/subcutaneous,one day of rest,5 days Fludarabine 30mg/m2/day IV(if<10 kg 1 mg/kg), 1 day Melphalan 140 mg/m2 IV(if<10 kg 4.7 mg/kg) 2 days rest, then Infusion preparing for the bone marrow transplant is a long process with many possible complications. He needs your prayers and thoughts, you know how concerned we are with our son.
(He never made it to his preparative regimen, Rocco past away on Aug. 29,2011 around 5-6 am, he & I wanted to go home was tire of the Hospital. it was sad that we both had to go alone)
Morgan Cooper’s Journey
Lil Ms Morgan was born on April 28, 2011 @1230 pm. Weighing 7lbs 7 oz. Staying in the hospital only 3 days after a planned c-section. She lost some weight before leaving the hospital but after a couple of weeks of plumping her with milk she gained her weight back plus more. Morgan was very quiet at home but made a fuss when came time to eat. But She did not display any type of symptoms to indicate she was sick besides some jaundice at birth.
At 7 weeks of age, Morgan’s body temperature was hot consistently for about a week (no fever), but it wasn’t until we were about to leave on vacation to Walt Disney World when we decided to check her temperature. She had a very high fever and so I took her to the local ER at the Children’s Hospital . She was admitted on a Wednesday, and believed to have meningitis. They started treatment for meningitis and they drew blood work trying to find out if the meningitis was bacterial or virus. In reviewing the blood work the doctor(s) realized that most of her test were out of wack. Because of her lab results, she was admitted from the basic pediatric observation floor to the PICU (Pediatric Intensive Care Unit). While on the PICU; they realized that her symptoms mimicked a rare blood disorder and immediately tested her for HLH (Hemophagocytic lymphohistiocytosis),as well as starting her on blood products to include (cryo,platelets and blood) to treat the test results. Her preliminary test came back a day afterbeing positive for HLH at which time she stated receiving chemotherapy and other medications that are used for this rare blood disorder. Today, we also received notice that the labs sent to Cincinnati were positive as well. So we are now preparing to go to Medical University of South Carolina for future treatment and bone marrow transplant.
Stephanie’s Story EBV and HLH
John Portuondo’s Journey
decline in health ultimately resulting in death. On May 30th we went to an urgent care center because John had been running an astronomical fever of 103 for a considerable period. At urgent care, we discovered inflamed nodules in his lungs and his white, red, and platelet blood counts were all considerably low.
Mississauga man documents journey with rare blood disease
Aug 21, 2009 – 8:22 PM
Sean Feltoe is going great distances to raise awareness for Histiocytosis.
It’s a rare disease that not many people have heard of, but the 22-year-old Sheridan Homelands resident knows it all too well.
For years he’s battled hemophagocytic lymphohistiocytosis (HLH), a rare autoimmune disease in which an excess of white blood cells attacks the body’s organs.
The disease took him from hospitals in Toronto to Cincinnati, where he ultimately received life-saving treatment thanks to a stem cell donation from a Sacramento stranger.
This summer, Feltoe will be retracing his steps with a month-long road-trip through North America.
He and his friend Ryan Luke, also 22, embark tomorrow, and will be visiting his donor in California as well as friends he’s made throughout his journey, all the while filming a documentary about the disease that nearly took his life.
“The main thing is to raise awareness and get the word out,” said Felto.
Although the idea for a road trip stemmed from him and his friend wanting to get away before “real life” starts, “it evolved into something much more,” he said.
With the help of his parents, Feltoe and Luke teamed up with production company SteamFilms, who have been helping Feltoe develop the outline and layout of his documentary.
They have also provided him with a professional camera, and will professionally edit the footage upon their return.
Feltoe will interview the doctors, friends, and other families struggling with the disease that he’s met along the years.
“It will also be a motivational piece for people suffering with HLH, so they can see my story and see, ‘you can recover’, but the main goal of the documentary is to bring awareness,” he said.
“So many people have no idea what HLH is. This disease is not taught in med school, most doctors have no idea what it is.
“I went through some really crappy times, and if I can do anything to prevent other people from going through the same things, I want to,” he said.
In February of 2008, Feltoe fell violently ill with flu-like symptoms. At just 17, he was offered a full soccer scholarship to University of Charleston, West Virginia and was excited to finish high-school and embark on the next chapter of his life.
Life, however, had other plans for him.
He spent 5 months at the Hospital for Sick Kids in Toronto, where doctors struggled to identify what it was that Feltoe was fighting.
HLH is a rare disease similar to cancer. It most typically occurs with children under the age of 10 and has a very low survival rate.
It is often treated with radiation and chemotherapy treatment, but the only known cure for the disease is a stem cell transplant.
Unable to have the necessary stem cell transplant there — the Toronto hospital didn’t have a transplant bed — Feltoe was air-lifted to a Cincinnati hospital, where he remained for more than five months.
He was sustained by blood transfusions as he awaited a marrow match.
His older brother was tested, his mother was tested, his father was tested but no one was a match.
Fortunately, a year prior to Feltoe’s diagnosis, a Sacramento woman signed herself up on the potential bone marrow donor registry.
Jenny Asay, a complete stranger to the Mississauga man, was a 10 out of 10 match.
Feltoe received the life saving stem cell transplant on December 13 of 2008.
It’s a day he’ll never forget.
Two years later, and two years ago this month, Feltoe met the woman he said gave him “a second chance at life.”
Ever since, they’ve remained connected.
“Since she donated, she came into my life and I think its important to keep her in my life,” said Feltoe.
Because of the stem cell transplant, Feltoe has made a remarkable recovery.
Once taking up to 60 toxic pills at once to fight his disease, he’s now down to three pills a day, all of which are vitamins.
He’s gone back to school, has since gone back to finish high school and is now an upper year student studying Criminal Justice at Humber College.
He coaches goalies at Bryst International Inc., a private soccer club in Mississauga, and is the lead singer of a band called The Steady Rebels, which released its debut album last week.
He is also in the process of organizing his third annual fundraiser for HLH, which along the years has raised 15,000 dollars to go towards Sick Kids hospital.
Teen battles rare disease with music, soccer and courage
Aug 21, 2009 – 8:22 PM
Sean Feltoe says he has been to hell and back the past 18 months, battling a life-threatening illness.
But the 19-year-old Sheridan Homelands resident said the ordeal, made easier by his love of music and his guitar, also taught him not to take life for granted.
And now, having received a clean bill of health, Feltoe is studying at home to finish high school and trying to become fit again so he can pursue another love — soccer.
Feltoe has Histiocytosis (HLH), a rare autoimmune disease in which an excess of white blood cells attacks the body’s organs. It’s often referred to as the “orphan disease,” in that it strikes too few people to generate government-supported research.
In February 2008, as he was making plans to attend University of Charleston, West Virginia on a full soccer scholarship to study physical education, Feltoe fell ill. He had flu-like symptoms, including high fever and vomiting.
Three days later he went to the hospital and, after blood work and other tests, doctors sent him home. After another several days, he was so sick that his family rushed him to emergency, and he was quickly transferred to the Hospital for Sick Children in Toronto. He remained there for five weeks, fighting for his life, before being diagnosed.
Unable to have the necessary stem cell transplant there — the Toronto hospital didn’t have a transplant bed — Feltoe was moved last Oct. 28 to a Cincinnati, Ohio hospital, where he remained for more than five months.
“My illness has taught me not to take life for granted,” said Feltoe, who regularly visits Princess Margaret Hospital in Toronto for follow-ups and blood work. “Music has a relaxing and calming influence on me. When I was in the hospital at Cincinnati, Ohio, there was a music therapist who used to come into my room and play the guitar and I would listen to the music and it helped me drift into sleep.”
Next Saturday, Feltoe will visit Steve’s Music Store in Toronto to pick up a new guitar, drums and recording equipment, courtesy of Starlight, Starbright Foundation. It helps youths cope with chronic and life-threatening ailments.
Feltoe says he and his best friend, Ryan Luke, plan to resurrect their band, Far Off Lights.
His attention will also be on soccer. Feltoe, a goalie, wants to play again for Bryst International Inc., a Mississauga private soccer club that provided his scholarship. The organization helps talented youth pursue professional soccer careers.
“Knowing his determination and spirit, it will happen,” his mother, Sue Feltoe, said.
“There’s a quote that I recently heard: Courage is being afraid, but then doing what you have to do anyway. And that is exactly what Sean did over this past 18 months. He took this disease by the horns and did not let it control him.”
South Harrison resident, Army Corps of Engineers volunteer, Eric Majusiak struck with rare illness
Published: Friday, July 06, 2012, 7:00 AM Updated: Friday, July 06, 2012, 7:32 AM
SOUTH HARRISON TWP. — Just last summer, South Harrison resident Eric Majusiak was in Joplin, Mo., cleaning up debris and working to rebuild the city after a devastating tornado tore through, destroying homes and businesses and killing more than 150 people.
The 27-year-old newlywed has always been an active person. He works for the Army Corps of Engineers and had been deployed to multiple devastated sites in the past few years. But this past February, he began feeling joint pain. Within a week, it had escalated to a full-blown illness that had him admitted to Temple hospital fighting for his life.
“Everything had seemed pretty much peachy. He was a relatively healthy person. He cut eight cords of firewood for our backyard last year,” said his wife Amanda Majusiak. “But he just seemed to get worse with time.”
After days of tests with his health worsening by the hour, Majusiak was put on an Extracorporeal Membrane Oxygenation (ECMO) machine — which adds oxygen to the blood while outside the body and filters it back in to the circulatory system.
He was diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH — a life-threatening immuno-deficiency.
For more than two months, Majusiak was on a ventilator, high doses of steroids, the ECMO machine and chemotherapy. Finally at the end of April, he began to show some improvement.
“He started to respond to treatment, and we began to see the light of getting out of the ICU,” Amanda Majusiak said.
But that was just the beginning. Majusiak had to relearn how to do many basic tasks.
“He had to learn to speak again. Learn to swallow again. He couldn’t even lift up his arm for a glass of water,” Amanda Majusiak said.
For Eric, the entire ordeal was completely unexpected. He still hasn’t fully wrapped his head around the fact that he is sick.
“I really don’t understand it,” he said. “I just couldn’t grasp the concept. I had just gone to the hospital one day, and I woke up two months later — like a day had passed. I was out doing a lot of physical activities just a week before I got sick. It can happen that quick.”
Now, Majusiak is trying to get used to living differently. Everything is slower. He is able to walk, but not for long. A wheelchair ramp had to be installed at his home — which neighbors and church members dedicated their time to accomplish.
But he doesn’t know if and when he will be able to go back to work. His medical leave is running out quickly, and while insurance has covered most of the cost of his illness so far, the couple — who were just married last fall — are expecting to have to pay at least $10,000 out of pocket for co-pays and medication.
“The disease that I have is one of the rarest ones in the group — they only know of very few adults in the world who have it. I’m just trying to understand the disease and disorders through the Internet,” Eric Majusiak said.
“Honestly it’s just awkward. It’s weird. It’s something you never expect to go through,” Amanda Majusiak added. “Elderly people, you expect to get sick and pass on. To have a 27-year-old kid get sick out of nowhere and they don’t even know if he’ll make it …. I don’t think anyone can even begin to put themselves in that scenario.”
Our HLH Journey
I’m Cole – a 5 year old living with a brother, sister, mom, dad and a disease called HLH. To get better, I need chemo and a bone marrow transplant. This blog documents my fight. My dad does most of the writing, but I pose for the pictures.
In the Fall of 2011, Cole was diagnosed with a very rare blood disease called HLH (Hemophagacytic Lympho Histiocytosis). The disease prevents his blood from regulating in the fight against infection. Without the ability to regulate, his blood seeks other things to attack, including his liver, spleen and other internal organs. Ultimately, it kills its host unless treated. Our little 5 year old host who once wore a Batman costume for 6 months straight.
This is a story of our long journey with our son’s rare disease. A disease with minimal information, virtually no funding and a staggering mortality rate. In many ways, it may have been easier to deal with a known disease, where the odds are more predictable, support groups exist, friends understand the situation, research is abundant and the treatment plan is well documented.
Carrie Marlin – Road to Recovery
On 15 October 2010, Carrie started her day as an active stay-at-home mother of three. She felt that she was in good health and had even completed two half-marathons earlier that year. That afternoon all of that changed when she suddenly began to feel sick with what she thought was a simple stomach bug while at a school festival with the kids. In just a few hours the pains in her stomach became so unbearable that I drove her into the Eglin Air Force Base Emergency Room where the attending doctors recognized her condition was serious and quickly admitted her into the Intensive Care Unit.
Patrick Charles Caruso
Published in Star Tribune from May 24 to May 28, 2012
Ever so bubbly soul Ishita was completing her 13thmonth when all of a sudden she could not digest any thing, kept throwing up after every meal and started having rashes on her body and legs.
She developed high fever a week later and the doctor initially diagnosed it as a bacterial infection. After multiple shots of antibiotics, her fever did not subside. Ishita was admitted to the hospital and the doctors ran a battery of tests for two weeks to determine the source of infection and endless medication were given through I V hoping something will work. She got so traumatized by endless poking that she stopped smiling even. No probable source of infection was found. We got transferred to Oakland hospital for further investigations. The doctors there were very pro-active and were able to diagnose the cause.
Unfortunately the diagnosis is a rare form of a immune disorder, called hemophagocytic lymphohistiocytosis, or HLH for short. Ishita’s immune system got triggered because of an infection. The immune system destroyed the infection but did not turn itself off. It started fighting against the other organs of the body thinking them to be foreign agents and that was the source of the fever.
January 28, 2011
Wonderful appointment yesterday! All of his blood levels went up and all of his liver enzymes went down! They are finally able to start Jackson on a new medicine as well. They were holding off on it because it can mess with the liver but now his little liver is strong enough to handle it. So all together now I give him 5 meds at home along with an anti nausea and the anti clot med for his PICC.
Chemo went well as expected. The doctors are very pleased with his progress. They also said that it shouldn’t be too difficult to find a bone marrow donor or matching cord blood for him because he is not a mixed race. The transplant will happen for sure if they find him a good match and as long as he is healthy enough to have one.
Matt Cwiertny Memorial Foundation
Matt was a 22-year-old junior art director for Marshall Advertising, who loved the L.A. Galaxy soccer, A.S. Roma, the Flight of the Conchords, The Dandy Warhols, Jack’s Mannequin, The 88, and Will Ferrell movies, when he got a really bad case of mono. We thought he’d recovered until six months later when Matt started getting extraordinarily high fevers, his blood pressure dropped, and his blood counts cratered. His doctors were confounded, especially when they concluded it was not mono. It was only after he went into respiratory failure that his doctors at USC learned he suffered from EBV-induced Hemophagocytic Lymphohistiocytosis (EBV-HLH), a blood disorder affecting only 1 of every 1,000,000 persons (after a bone marrow biopsy, the doctors decided he’d had mono earlier). While EBV-HLH is not cancer, it acts and is treated like a cancer. The disorder destroys healthy blood cells, and is treated with chemotherapy, and a bone marrow transplant, if necessary. EBV-HLH often induces lymphoma, which it did in Matt. One month after his EBV-HLH diagnosis, Matt learned he was also battling NK T-Cell lymphoma, one of the most aggressive and least researched blood cancers there is.
In December 2008, Matt received his bone marrow transplant. While it temporarily put him in remission, his lymphoma returned in February 2009, and in June 2009, Matt learned it had returned in the form of an inoperable brain tumor. After chemo failed to put him in remission, Matt began radiation treatment. Before finishing it, he was readmitted to the City of Hope in late September 2009. At that time, Matt was in a weakened state, with his EBV levels extraordinarily high that it was debilitating to his liver and kidneys. Unfortunately, the doctors were unable to administer any treatment that could reverse the affects of the EBV and its impact on Matt’s vital organs… And at midnight on October 3, 2009, he passed away with his family surrounding him.
Please help us fund medical research for EBV and EBV-associated diseases, including blood cancers. We need cures and NOW. Let’s do this.
To learn more about the Matt Cwiertny Memorial Foundation and what we want to accomplish, please visit: http://www.mattcwiertnymemorialfoundation.com
Cole’s HLH Journey
Please help Alexsis and her family during her battle with HLH; Hemophagocytic lymphohistiocytosis!
Fight For Lexy
Organizer : Megan Reyes
This Fundraiser ends on : 10/11/2012
Beneficiary : Alexsis Reyes
Alexsis Reyes was just your normal, happy, sweet, outgoing, and healthy 14 year old girl up until June 6th, when her family thought she had just came down with the flu. Alexsis was rushed to Childrens hospital almost going into shock. Within days she was diagnosed with HLH (Hemophagocytic lymphohistiocytosis), a rare and life threatening disease that attacks her immune system. This is a very aggresive disease, which starts with fevers, ill feeling, and within days, this disease attacks the bodies white blood cells, platelets, liver, spleen, kidneys, lungs, and heart. Undiagnosed in time, or without the proper treatment, one would die in a matter of days. This is a very rare disease, genetic HLH affects 1 in 1 milllion births, acquired HLH affects 1in 50 000. Sadly, Alexsis has already begun a series of aggresive treatments and chemotherapy after only being in the hospital 4 days. She has been so brave with this so far, and though not easy, her only request is that she just wants to go home and be with her family. We dont know her prognosis yet, it all depends on how she responds to the treatments she is being given. She will continue outpatient chemotherapy over the next few months, and if she doesnt respond to the treatment, she will need a bone marrow transplant. HLH is a rare, and deadly disease. Half of the people whom have this disease, dont survive. Her family is praying for a miracle. Alexsis’s family is going to need assistance with expenses that this unexpected tragedy has brought upon them. She will need alot of treatment, while in the hospital, and continuing on when she gets better and returns home. Her family is asking for any help that can be given to assist with her medical and cost of living expenses that the family will incur over the several months. Alexsis has 3 brothers, ages 13, 10, and 2, and 1 sister, age 6. One can only imagine the difficulty in trying to deal with this horrible situation for Alexsis and her family. Anyone that knows Alexsis says she is a sweet young lady, with a very big heart. Any donation is greatly appreciated, and going into an account to strictly help Alexsis and her family during her treatment. Please help our family if you can, this is a very rough time for us…Thank you all for your thoughts and prayers!