The Hyper IgM Foundation Blog

MARCH 2016 NEWSLETTER PATIENT HIGHLIGHT – THE HILL FAMILY

Mar 1, 2016

Liam and Tiffani

Meet Liam, he is almost 1 years old and like his older brother Oliver, Liam was born with X-linked Hyper IgM Syndrome. Liam underwent a hematopoietic stem cell transplant on January 22nd and is doing very well. He has engrafted and after 20 days in the New Orleans Children’s Hospital he has been released to the outpatient clinic. Tiffany and Joshua Hill, Liam’s parents, have already been down this road before with their 2.5 year old son Oliver’s transplant last year. He has been cured and is doing very well, even enjoying taking soccer classes with other kids. We are all rooting for Liam to follow in his brother’s footsteps and hoping for a complete cure.

Here is what Liam’s mom, Tiffany, had to say about her experience connecting to others through the Hyper IgM Foundation: “When we found out our son had Hyper IgM, we were relieved to have a diagnosis, but extremely fearful of the unknown.  Because this is such a rare diagnosis, we couldn’t find much information and didn’t know where to turn. We luckily found the Hyper IgM  group and now, don’t know what we would have done without this wonderful group of people. The group has a plethora of information and knowledge on all things Hyper IgM related.

We’ve received so much love and support from the group, and our minds put at ease knowing that we have a safe place to ask questions and receive moral support from people that know, all too well, our heartaches and concerns. The Hyper IgM Foundation has been a great place for everyone to connect, get up to date information and have the ability to get in contact with some of the most knowledgeable experts on Hyper IgM.

The foundation sent our son a thoughtful care package and always made it clear that they are there if we need them. The Hyper IgM Foundation and Facebook group has become a family to us, in one of the most difficult times in our life, and we are grateful for everything they do.”