Fundraising for Liam

The family and friends of our little warrior, Liam Smith are uniting to raise support in helping him and his family as they fight to overcome Liam’s rare, but life threatening disease. We hope you will join us.




You can use the donate button above to make a donation through PayPal. You can use a PayPal account or pay with a credit or debit card, If you donate without a PayPal account, you will need your email address, phone number and you will be asked to create a password than you agree to terms and it will go through. Thanks

By Mail to:   Liam R. Smith    P.O. Box 1183      Woodland, WA 98674

Clearly this situation is placing tremendous strain on Liam and his family. We’re asking you for your help in any way you feel you are able. Liam needs our prayers for his health. His family needs prayer for wisdom, peace, strength, and hope. Donations can help to relieve the hardships that a  family in a crisis indures. This will help Liam’s parents be able to focus more clearly on Liam.

Thank you for the care you’ve demonstrated by taking the time to read this, and thank you for helping Liam and his family.

This is his story…. (October 8th, 2011) At four weeks of age Liam got a cold. He began to run a high fever and was taken to the doctor, and then to the ER. Seeing that his liver function was elevated, he was sent to Emanuel Children’s Hospital in Portland, OR. While the doctors worked on a diagnosis, Liam’s fever would not break, and his organs began to fail. It was then, at four weeks old that Liam was placed on life support and kidney dialysis.

Liam has spent most of his very young life isolated in hospitals, on chemotherapy, and taking steroids. He has a very rare disorder called hemophagocytic lymphohistiocytosis, or HLH. This disorder occurs when the body has too many of a particular cell, called a histiocyte, as well as too many of another cell, called a lymphocyte. Both of these cells are so-called white blood cells, responsible for fighting off foreign bodies and infection. However, when there is an over abundance of them, they can begin to invade good tissue and damage organs such as the liver, spleen, bone marrow, or skin. HLH is life threatening, but unfortunately, given the rarity of the disease there is relatively little information available on it. In fact, it’s called an orphan disease because it’s so rare it attracts little attention and receives no federal funding for research.

While the disorder is not cancer, it is treated in a similar manner, and so Liam has been in one form of cancer treatment or another since he was a month old. His initial round of chemo therapy lasted for nine weeks, at which point the HLH went into remission. However it reappeared three weeks later. After being hospitalized again, Liam restarted the treatment course to put the HLH back into remission.

Update: Apil 2011 – Liam left for Seattle on April 19, 2011 to start the process for his lifesaving Bone Marrow Transplant, that he will recieve on May 12, 2011. Liam’s older brother Hunter will be bone marrow donor. It will be a long journey one day at a time. The first year post transplant is very critical. Please Keep Liam and his family in your prayers.

Update: October 2012 - Liam’s graph has been slowly dropping since November 2011. So he has to recieve a DLI, donor cell boost from Hunter.

Post from Mommy: October 4, 2012

So I got the call today. We will head to Seattle on the 9th and I was informed that we will be staying at least a month. It is a very long process. It starts with blood draws on both Liam and Hunter and consults then Liam will be getting a pic line placed in his arm, then he will be admitted to the hospital to receive immune suppression. Then Hunter will donate at the SCCA while Liam is in the hospital and then Liam will receive the boost. This happens over a week and a half period. They are keeping us close to monitor Liam closely. I am terrified to be stepping back into HLH world. I really hoped we could say goodbye to it forever, but here we are and my hands are tied. Liam has no other option and as a mother those are the words you never want to hear. I’ve heard that so many times and its just not right. My love for my child does not allow me to give up but there are days that you don’t want to have to be so strong. I’ve always told myself as long as Liam is fighting so will I and he’s a fighter so I have hope that we will get through this. I pray this works and that we are not going to have to face another bone marrow transplant. Bone marrow transplants are just horrible, to watch your child in so much pain kills me inside as a mother. You truly at that point have to Let Go Let God cause that’s the only thing that will get you through. I could go on forever but I won’t, just please pray that this works and Liam does not get GVHD (Graft vs host disease). Thank you

To view Liam’s Journey video/slideshow By: Nate & Heidi Kellar
click on the Youtube link :http://youtu.be/e_4ikT8BVnA

 

3 Responses to Fundraising for Liam

  1. KD says:

    I was hoping to contact you to find out who you went through at Seattle Children’s and Emanuel. I am in Portland as well and just recently discovered that my son died from HLH. He was in perfect healthy until two days before he died at 15 months and 5 days old. He had a high fever, with no other symptoms. He had never, ever been sick before in his entire life. He was running around laughing and playing, nothing was slowing him down and then he died just hours later. It is not the usual presentation with HLH which is why it went undiagnosed until now. He left his beautiful little body in just a few hours November of 2009. We are now concerned about his little sister and if she might also have this disorder. I am hoping you will contact me and let me know who you went through, we are having a very hard time finding a doctor who is familiar with this disorder. Thank you. (And if you would delete my comment when you see it, I would so appreciate it)

  2. Butch & Sherry Ghigliotty (Los Abuelos) says:

    We are little Miabelle’s grandparents (Vanessa’s mom & dad). We know your pain and feel for you. We first heard of Liam’s situation a few weeks ago. We’re so sorry that Liam and you are going through this. Have faith. God is merciful and knows your anguish. Pray. Prayer has served our little Miabelle and will move any mountain. Be strong, be couragious and persevere. And when you feel overwhelmed and are at the point of caving in to anger – shout, scream, cry, let loose. Then stop and think just how painful it must be for God our creator to see his child suffering so much, and you and your family as well. This was not why He brought us into the world. His purpose is much grander and inconceivable to us in our present state. But Liam and you will be rewarded for your perseverance, and your reward will be great. You and your husband and family must be strong for one another and be there for each other when you fall into the depths of despair. Prayer will raise you up and faith will keep you.
    You all will be in our prayers, especially little Liam. Vivat Jesus.

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