September is Histio Awareness Month – Please help raise awareness and learn the facts

Posted on September 12, 2012 by Nana

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Ronan’s Song – His Mom’s Interview about Ronan and the song by Taylor Swift

Posted on September 12, 2012 by Nana

Amazing song for an amazing little man. Taylor Swift is such a sweet person to be a voice for Ronan and his mom, it is so important to raise awareness about Cancer and so many rare diseases like HLH.               http://rockstarronan.com/

http://www.dailymail.co.uk/news/article-2201718/Maya-Thompson-The-heart-breaking-story-year-olds-battle-cancer-inspired-Taylor-Swifts-latest-hit-Ronan.html

One person’s voice can make such a difference in so many peoples life’s. As a grandparent of a child with a rare disease we are trying like so many of our fellow HLH family’s to help raise awareness. It is classified as a rare disease, no Government funding is not available to help find a cure. All research is done with private funding. 

PLEASE HELP RAISE AWARENESS and learn more about HLH, you could save someones life. HLH is deadly if it is not caught early.

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Happy Birthday to Liam, post from momma

Posted on September 10, 2012 by Nana

Two years ago today I have birth to a beautiful baby boy! His courage and fight are unmeasurable. He inspires me everyday and his smile melts my heart. I could not imagine life without him, and I hope I never have to. He was born in Histio Awareness Month a true warrior who has yet to lose a fight to HLH. I believe in him and his strength so here’s to many more Birthdays to come!! Happy 2nd Birthday Liam River Smith momma couldn’t be prouder of you. ♥

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My Hero… FB post by Mommy

Posted on September 9, 2012 by Nana

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The Third Annual HLH Boot Camp – The Diagnosis and Management of HLH (Family Registration)

Posted on August 24, 2012 by Nana

Saturday, September 22, 2012 from 8:30 AM to 5:00 PM (EDT)

Cincinnati Children’s Hospital Medical Center
3333 Burnet Ave
Cincinnati, OH 45229

The Diagnosis and Management of
Hemophagocytic Lymphohistiocytosis (HLH)

The Immune Deficiency and Histiocytosis Program at Cincinnati Children’s Hospital invites you to a free day-long workshop on the diagnosis and management of hemophagocytic lymphohistiocytosis (HLH). Morning sessions will cover the biology and genetics of HLH, diagnosis, treatment, the bone marrow transplant process, and ongoing research.  The afternoon will include sessions regarding social, emotional, and educational issues during and after treatment and the role of family advocacy in driving advances in research, as well as a panel discussion with experts from both the morning and afternoon sessions
Dates, times and locations
Dinner at the Ball Park 

Friday, September 21, 2012 • 5:45- 10:00 PM
Great American Ball Park, Riverfront Club

Boot Camp

Saturday, September 22, 2012 • 8:30 AM – 5:00 PM
Cincinnati Children’s Hospital Medical Center

Childcare arrangements
If you need childcare services, please contact Amy Lawton at 513-803-3218 orHLHbootcamp@cchmc.org by September 7, 2012 to make a reservation.

Questions?
Please contact Amy Lawton at 513-803-3218 or HLHbootcamp@cchmc.org.

http://hlh2012family.eventbrite.com/

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Brothers :)

Posted on August 21, 2012 by Nana

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Outside Photos of Liam

Posted on August 18, 2012 by Nana

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DAY +458 Appointment in Seattle – Results

Posted on August 15, 2012 by Nana

Update from Kristy – So Liam’s results: his bone marrow shows 5% donor cells and I’m not sure if that means new donor cells or total donor cells. I will be talking to the doctor about that tomorrow. His liver was elevated again so they retested and if his chimerism from the blood comes back lower then we discuss a boost from Hunter but the doctor will have to discuss that with cinci the deadly graft verses host disease before we do it. Also Liam may have to have a liver biopsy if it keeps elevating before we can give him a boost. If the boosts don’t work then Liam will receive another bone marrow transplant but this time from Noa and a harsher regiment. I hope it doesn’t come to that 🙁 please pray that Liam does not need another transplant. Thank you

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Liam is 23 months old today!

Posted on August 10, 2012 by Nana

Kristy’s Facebook Post:
Liam is 23 months old today! Such an amazing little man 🙂

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DAY +454 Bone Marrow Aspiration

Posted on August 9, 2012 by Nana

Liam’s appointment went well today. He weighs 24.7 lbs., and is 34″ tall. We won’t know the results until next week, please prayer with all your heart for good results.

Kristy’s fb post: I will never get used to Liam being sedated, it’s the worst feeling ever 🙁

Our Brave Little Warrior

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