Dean’s Journey with Artemis SCID
Dean Hatahit was born on September 19, 2023. His parents, Razan and Hisham, were so excited to bring their first baby into the world. They brought their healthy newborn home from their local hospital in Orange County, California with no hiccups, but two days later they got a call from their doctor. Dean had tested positive for Severe Combined Immunodeficiency (SCID), a rare genetic disorder that meant he was born without T and B immune cells. Dean was diagnosed with a rare form of the disorder called Artemis SCID, affecting only one out of every three million babies.
Fra det øjeblik ændrede alt sig for deres familie. Dean tilbragte en måned på det lokale hospital sammen med Razan, og ingen af dem kunne have nogen kontakt med omverdenen på grund af Deans skrøbelige tilstand. Derfra blev han fløjet til UCSF Benioff Children's Hospital for at deltage i det eneste kliniske forsøg i verden med hans sjældne form for sygdom.
“Our whole world came crashing down once Dean was diagnosed. We kept thinking it couldn’t be real – he seemed so healthy, how could he have such a rare and scary diagnosis? Everything we thought our life would be like with our first baby just wasn’t true anymore, and that was hard to accept.” – Razan, Dean’s mom
Familien Hatahit kom første gang til Family House i begyndelsen af november, da Deans kliniske forsøg på UCSF begyndte. De blev gennem Deans knoglemarvshøst, kemoterapi, flere ture til skadestuen og mange sene aftener. De blev gennem Thanksgiving, jul, valentinsdag og påske. Gennem det hele fandt de styrke i hinanden og støttede sig til Family House-personalet og andre familier.
Dean vil blive i det specialiserede kliniske forsøg på UCSF, indtil han er 15 år. Razan og Hisham vil fortsat rejse frem og tilbage og opholde sig på Family House hver tredje måned, indtil han fylder to år, og derefter en gang om året i de følgende år.
“For me as a father, it’s the peace of mind I feel having the staff and security here at Family House. I don’t have to worry as much when I need to be back home for work and Razan stays with Dean alone. It really is a home away fro. home” – Hisham, Dean’s dad