“Did you know that in the old days, they used to remove 98% of the pancreas?!” This quote comes from Dr. Adzick’s imagined future, a world where babies born with Hyperinsulinism (HI) have access to more advanced medications. A world where they no longer endure invasive surgeries or harsh side effects from current therapies. He … Read more
(The following is shared by HI parent Felicia Huffman:) When my daughter, Jilani Rose, was diagnosed with congenital hyperinsulinism (HI) as a baby, our world changed overnight. She underwent a 98% pancreatectomy — a lifesaving procedure that came with a lifelong consequence: the development of insulin-dependent diabetes. We’ve come to view this transition through both … Read more
Ricky is an energetic, larger than life 8-year-old who loves Boy Scouts, Minecraft, gaming, building, music, and most importantly, being a big brother to his brother Michael. He is the most empathetic person you will ever meet, constantly trying to help and put a smile on your face, especially when he realizes you could use … Read more
Whitney, one of our HIGR Ambassadors, shares with us the following story. “If you had asked me 10 years ago what a rare disease was, I wouldn’t have had an answer for you. My youngest, Bohannon, was diagnosed in 2014 at 3 weeks of age with the diffuse form of congenital hyperinsulinism. She inherited 2 … Read more