Hope for Henry:Help Him Fight Many Rare Autoimmune Diseases

After months of struggling with autoimmune issues, tests, imaging, biopsy surgeries, and genetic testing, our perfect boy was diagnosed with two very rare genetic diseases, Bechets Disease and Deficiency in Adenosine Deaminase (DADA2/ADA2), in addition to Juvenile Arthritis and Cytoclastic Vasculitis.

he has a pending diagnosis for a third, more severe autoimmune immune disease, but so far he is triple positive.

His genetic diseases are so rare, and come with so many symptoms and lists of concerns. The risk of early onset stroke and bone marrow failure are high. He struggles daily with arthritis, mouth sores, and struggles to gain weight (just to name a few). His medical care is ongoing with frequent labs, weekly and biweekly injection medications, the hope for play therapy, doctors visits, and will soon travel to see specialists in these specific diseases.

more than likely, there will be a bone marrow transplant in his near future.

while insurance is *sometimes* a helpful and wonderful thing, there are so many costs not covered by insurance (including medications insurance may not approve), and any little help for our baby would be appreciated. We have several big “doctor trips” in the next few months that will require several days-week far from home.

We know this is a forever thing for Henry, but hopefully we can get a good handle on it in the first few years!