I read somewhere recently that the average person gains two pounds between Thanksgiving and New Year’s Day. Every year, this pesky little fact haunts our waistlines as November turns to December and then January. This seems like a big deal to those of us trying to wiggle into our holiday party finery. Yet, it’s really inconsequential when we compare this to what many of our friends with congenital hyperinsulinism (HI) go through every day of their lives.
For many folks with HI, the disease and the lifestyle fostered by the disease make eating just plain miserable, and not just during the holiday season. As many of you know far too well, many babies, toddlers, and children with this disorder have no desire to eat. Ironically, the consequences of not eating are huge. A meal missed can cause severe hypoglycemia, a threat to the developing brain. It’s like a cruel joke. These kids must eat to save their brains from damage, yet eating is so unpleasant for many of them that they all but refuse to eat. Just imagine the stress on the parents.
Even worse than the picture described above is the fate of those children who do not receive a timely diagnosis. Those babies and children have parents and doctors who don’t know they must eat precise amounts at precise intervals, and also often need additional medication and sometimes surgery to control hypoglycemia. These poor children are at great risk of neurological damage.
What makes this situation so frustrating is that the majority of these kids could lead perfectly healthy lives with no neurological damage if a proper and timely diagnosis were made.
Five years ago a group of concerned parents and caregivers of children with HI set up this nonprofit organization dedicated to improving the lives of children and adults with HI. Our vision is a world where timely diagnosis is routine, proper care and support is afforded to every patient and family dealing with the disease, and ample funding is available for every excellent research project leading to an effective treatment or cure.
Today is the second day in my new role as CHI’s first executive director. This is a great honor for me and I hope to help CHI raise its profile to benefit all the people living with HI all around the world. The CHI board and I will need lots of help from volunteers and donors to make our voices heard. We are counting on your help. As we enter this season of holiday gift giving, please consider making a contribution in honor of a loved one to CHI in support of this incredibly worthy cause.
