Support CHI for Lily!

OUR STORY

18 hours after our magical Lily was born she was quickly whisked away from us and sent to the NICU. She had dangerously low blood sugar but we assumed there would be a quick fix and she’d only be there for a few hours. Little did we know we’d spend 60 of her first 88 days of life admitted to 3 different hospitals treating a rare and serious condition called Congenital Hyperinsulinism (CHI). Glucose (blood sugar) feeds the brain and when it is too low for too long, seizures and permanent brain damage will occur. Lily’s CHI body tries to keep her in this low glucose state constantly.

I am turning 30 on July 20th and the only thing on my wishlist is help raising money for Hyperinsulinism Research at The Children’s Hospital of Philadelphia (CHOP), the home of our last hospital stay and of the team currently overseeing her complex care. 

Why should you give to this rare thing you’ve never heard of?! Rare diseases and conditions do not get attention but require significant resources. Many result in premature, early infant / childhood death or irreversible damage and CHI is one of these. >90% of of rare diseases do not have an FDA approved treatment, including Lily’s, which makes treatment complicated and brings significant risks . After Lily’s first treatment gave her extremely scary side effects (pulmonary hypertension in a 6 week old…), we now have to give her an adult oncology drug and sugar water through a GTube to keep her stable. She has been a champ through surgeries and endless blood sugar pricks. We have been fortunate to have world-class medical care that helped us identify Lily’s diagnosis early to prevent outcomes we can’t even dare to think about, but we are the lucky ones. 

On top of being one of the best children’s hospitals in the world, CHOP is home to one of only a few Hyperinsulinism centers in existence. They are at the forefront of research, particularly focused on developing new treatments. Funds contributed will go directly to the team at CHOP who are working on making breakthroughs in CHI happen everyday.

Please consider making my first momma birthday wish come true and support the team that keeps our Lily stable (literally on a daily basis!) so that they can save many more tiny lives. 

Much love and endless thank yous❤️ Lily, Kevin, Laura, and Hugo

MORE ABOUT GIVING TO CHOP

CHOP is a charitable, nonprofit hospital, and philanthropic gifts are vital to making the breakthroughs needed by children worldwide. With your help CHOP can transform the patient-family experience, forge new discoveries, bolster training and education programs, advocate for children in underserved communities, and quickly respond to new opportunities.

As North America’s first pediatric hospital, and one of the best in the world, only CHOP can assemble the best talent and deepest resources, the widest range of research and clinical care, and the most robust tools to accelerate the prevention and cure of illnesses that keep kids from being kids.

Now is the time to ensure that CHOP has the resources to keep creating the firsts in pediatric medicine for which they are world-renowned.

MORE ABOUT CHI

https://rarediseases.org/rare-diseases/congenital-hyperinsulinism/

https://congenitalhi.org/congenital-hyperinsulinism/#overview