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 recessive genetic mutations which caused her pancreas to produce massive amounts of insulin and constant life-threatening low blood sugars … again, who knew that was a thing?!?”
“Over the past 10 years I have watched Bo flourish while navigating life with a rare disease, I’ve learned how to advocate and be a voice for my medically fragile child, all of which wouldn’t be possible without the research, community, and support of Congenital Hyperinsulinism International.”
“It’s an absolute honor to be invited to be part of the inaugural group of HI Global Registry (HIGR) Ambassadors. I cannot think of a better way to use my voice and my platform as a mother of a child with HI to raise awareness of the importance of research & development for this life changing rare disease. HIGR is key to the success of better care, better treatments, better medications, and improvement in the quality of life with HI. By using our voice and utilizing HIGR we can be the reckoning force that paves the way for the future of life with congenital hyperinsulinism.”
