When Khloe’s mother decided to plan a first birthday party for her daughter, she decided she wanted to mark the occasion by helping families living with congenital hyperinsulinism (HI).
” With Khloe’s 1st birthday coming up, we knew this was the opportunity. She already has so many clothes and toys, so when we sent out her birthday invites, we included a small insert that asked people to make a small donation to CHI, in lieu of gifts.”
Within days of Khloe’s friends and relatives receiving their birthday party invitations, Congenital Hyperinsulinism International (CHI) started to receive donations in honor of Khloe on her first birthday.
What is truly remarkable about this is that Khloe’s hyperinsulinism was transient and she no longer needs to take medication to maintain normal blood sugar levels. Khloe’s mother shares why she was inspired to raise these funds:
“Giving back to the community has always been a part of my family. This disease is so crippling on our kids as well as the families. I’m involved in some of the online communities for kids with HI. It’s heartbreaking hearing all these stories, each one so different and so unique. There are so many horrible diseases out there but this one is very different. It’s not in the news and it’s not getting the funding it truly deserves. So we wanted to focus on doing what we can to help bring more funds to organizations like CHI that are dedicated in helping families, bringing awareness and funding research.”
Khloe’s mother knows all too well how difficult to manage this condition can be. Khloe’s troubles started in an all too familiar way: “About 48 hours after Khloe was born, she was very lethargic, after many attempts at getting help from the nurse (who said nothing was wrong), she suddenly started to turn blue, and go into shock. She was rushed to NICU, with a blood sugar level of 15. After being on a dextrose drip and steroid for a few days, we got an endocrinologist to come in. She told us she may have HI and it was too early to tell what kind. To make a long story short, they tried her on a low dose of diazoxide and she responded. Some genetic testing was done, all came back negative.” Khloe’s early days are a reminder of the work that still needs to be done to prevent prolonged hypoglycemia in the first days of life. In Khloe’s case, the situation soon resolved itself . Over time it became clear there was no longer a need for diazoxide and blood sugar levels remained normal, yet this did not stop the family from giving.
CHI is so grateful for these donations and for Khloe’s family’s giving spirit. While Khloe’s family members no longer face a future with HI, they will always be part of the HI family, having shared in the intense and frightening experience of parenting a child with severe hypoglycemia. This act of kindness is also a reminder that those with transient HI should be included in all of our activities. Since the disorder is so rare, those families affected by transient HI are an important part of the HI community. Like all HI families they need support because of the experiences they have had and they can help to raise awareness and funds to improve the lives of people still living with the condition just as Khloe’s family has done.
