In most respects, Alyssa Williams is a typical six-year-old. She’s a big fan of swinging, singing and dancing. She enjoys playing with Barbies and spending time with her cousin Morgan and her brother Carl, who is 21 and in the Army. She likes to tickle her daddy and play Squinkies.
In addition to doing all the stuff a typical six-year-old does in the summer, Alyssa and her family spend a lot of time managing Alyssa’s congenital hyperinsulinism. This involves taking a medication every day (diazoxide), and checking blood sugars with a meter to make sure Alyssa does not suffer from hypoglycemia. When Alyssa is sick with a normal childhood bug, she is at greater risk of having hypoglycemia requiring hospital visits and an intravenous dextrose drip.
Alyssa does not like having congenital hyperinsulnism. “I don’t like going to the hospital. The medicine makes me hairy. “ The medication, diazoxide, does indeed cause excessive hairiness. The children who take diazoxide learn to cope with this and to feel beautiful irrespective of the extra hair, but it is understandable that a six-year-old would not be happy about this side effect, and certainly not happy about making frequent hospital visits. Alyssa is happy that when she does have to go to the Children’s Hospital of Philadelphia, they “let you give a doll an IV.”
With the help of her mother Heather, Alyssa’s unhappiness with her treatment led to a very wonderful project. Instead of just accepting the current treatment for her condition, Alyssa decided to take action. “Alyssa had been wanting to have a lemonade stand for a long time. My sister and I were planning a yard sale and thought it would be a great opportunity to have a lemonade stand. Alyssa’s Aunt Sue asked her if she wanted to donate the money she made and Alyssa agreed with me that we should donate the money to hyperinsulinism research.” Alyssa thought this was a fantastic idea and added: “So I don’t have to take medicine anymore and I want to help the other kids too!”
Last Saturday, Alyssa had her lemonade stand and was able to raise fifty dollars. She is very proud of her accomplishment and feels like she is now part of the solution. The money Alyssa has raised will be donated to Congenital Hyperinsulinism International (CHI). CHI raises awareness of the disorder to increase timely diagnosis, supports research and improved care and advocates on behalf of families living with congenital hyperinsulinism. Alyssa hopes her fundraising project will spur others on to embark on similar projects so that she and all the other children with congenital hyperinsulinism have a brighter future.
