Background Story

Henry Thome's Story

firefoxHenry has been diagnosed with a very rare form of dwarfism called Cartilage Hair Hypoplasia (CHH).  Some components of CHH can include immune dysfunction and anemia.  Unfortunately for Henry, he has both. 

His body is not producing T-cells like a normal child and his anemia requires weekly blood checks and occasional transfusions (6 since April).  Henry remains vulnerable to infections and illnesses that an average child would fight off.  So we must avoid crowded public areas and groups of kids.  We spend a lot of time at home playing with cars and trucks, reading books and chasing the dog. 

Henry's team of doctors has recommended a bone marrow transplant to correct both the immune deficiency and the anemia.  The transplant will be from donated cord blood instead of a live donor.  This means that technically speaking, Henry will undergo a cord blood transplant. We agree that this is the best course of action for him (especially since they already found him an exact HLA match).

Despite all the health concerns, Henry is developing normally both physically and cognitively.  At 14 months he has been walking for awhile now and is more fun than ever.  He is playful, comical and a joy to be around. 

We are extremely nervous and scared about the next year and all it will entail.  At the same time we remain hopeful that this is going to be a success and that Henry will come out of the transplant stronger than ever.

We thank everyone for their continued support.  Please check the Journal section for the latest updates on Henry's progress.