As many already know, my son Ricky was born two weeks early, but was well over 8 pounds. Due to this, he received additional tests to check his health. We discovered his blood sugar levels sat way too low, and he was at risk of having seizures. He spent a week in NICU, followed by a week at CHOP, where he was officially diagnosed with Congenital Hyperinsulinism and placed on the medication diazoxide.

And that’s about all we know.

Ricky’s blood was tested with all KNOWN genes carrying CHI, and everything was inconclusive. This means whatever Ricky’s gene is, it hasn’t been discovered yet. We can’t have our own blood tested because the CHOP team doesn’t know what they’re looking for. We don’t know how long it’ll last. We don’t know who’s side of the family it’s on. We don’t know the chance of passing it to a sibling or him passing it to his own kids. We don’t know why he runs high or low at random times, we have to basically take a guess and listen to probabilities. We just learned that we don’t even know if Ricky formed the disorder himself while in womb. 

That’s why this research is so important to me. That’s why every year I fill up dashboards by reposting this stuff day after day. That’s why I’m trying to raise the money. Because, even at my second convention for Ricky’s disorder, I was  still met with a lot of “I don’t know” answers from some of the most renowned doctors in the country. I want answers for Ricky, and for all of the kids like him with those undiscovered genes, those medical mysteries. 

My goal this year is to raise $1,000. So please, if you see this, consider donating. Consider reposting it. Consider asking friends to repost it. Consider asking FRIENDS OF FRIENDS to repost it. For all of these kids who don’t have answers, who deserve them. Help us solve the mystery that is Congenital Hyperinsulinism.