Welcome to our HI Hopes site!
This isn’t expert advice. I’m just a mom, documenting my family’s journey through Congenital Hypersinulinism (CHI or HI). A rare disease that causes my son to be severely hypoglycemic. The cause is often unknown, sometimes treatment works, sometimes it doesn’t, insurance companies deny important procedures and devices, experts are spread far apart, and life brings challenges you never considered. We cling to hope; hope that our son has the transient form of this disease and will out grow it, that over time things will get easier, that we’ll be wiser, but mostly that our son will go on to have a beautiful and healthy long life.
If you are a parent of a child with a rare disease, then you can understand. Before my son’s diagnosis I had never even heard the word “Hyperinsulinism” and never did I know how much it would shape our lives.
I’m on a mission to educate myself on this disease. To read case studies. Talk to parents. Engage with doctors. I’m in a position that I have to be able to advocate and articulate on a disease that most of the world has never heard of. This isn’t for a college course or research paper, this is my son’s life.
My son has suspected diffuse hyperinsulinsm, he is diazoxide responsive, and there is no genetic explanation. He has had Baylor of College Medicine’s hypoglycemic panel run as well as Trio Whole Exome Sequencing (Trio WES) and they have been non-diagnostic. Our next goal is to enter BCM’s Undiagnosed Disease Network, in hopes that as science evolves one day we’ll know the cause.
We are followed by Texas Children’s Hospital’s Hyperinsulinism program and have the wonderful support of Congenital Hyperinsulinism International and well as their parents forum guiding us through this journey.
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