Crosby has Congenital Hyperinsulinism, a condition so rare that it's known as an "orphan disease." Crosby is featured on the University of Pennsylvania's Orphan Disease Center's webpage. http://www.med.upenn.edu/orphandisease/
Orphan diseases such as Hyperinsulinism rely on private fundraising for research. All funds that we raise through May 21, 2016 will be matched by UPenn. Please help us reach our goal!
There are currently few treatment options for Hyperinsulinism, and the medication that Crosby relies on every day is currently in limited supply. For the last two months, we have struggled to obtain his essential, life saving medication (which he receives via injection three times per day) as many pharmacies have, incredibly, simply run out of it.
Those of you who know Crosby know that although he requires a lot of specialized care, overall, he's doing great. That's due to the fact that despite the rarity of his condition, previous fundraising resulted in the development of a prenatal genetic test which we were lucky enough to have obtained. Crosby was born with no detectable sugar in his blood. If the doctors had not been standing by ready to treat him, the lack of sugar could have caused seizures and irreversible brain damage. Unfortunately, the genetic test we received is not commonly administered and detects only one of many forms/causes of Hyperinsulinism. This community of brave parents and children really needs our help! Thank you!