Team Noah

Noah was born a happy, healthy baby, but he pooped A LOT. We asked our pediatrician about it at every newborn checkup but were told it wasn’t a problem. Then one morning when Noah was 7 weeks old, things took a turn for the worse. 

We first took Noah to Chester County Hospital, where he spent three nights while they placed him on a ”bowel rest” (no formula or food, whatsoever) under the suspicion that he had some sort of virus/allergy. When Noah’s condition continued to decline despite three days of bowel rest, Chester County Hospital decided he needed to be transferred to CHOP in Philadelphia. 

Upon arrival at CHOP, Noah was admitted to the general pediatric floor where the amazing staff at CHOP continued to assess whether he was sick with some sort of virus/allergy. They tried yet another bowel rest, but Noah did not improve. At that point, CHOP determined that Noah needed a PICC line directly into the veins surrounding his heart, through which they could provide him with nutrients. Noah’s status started to improve, so it was time to reintroduce formula and we were elated. Unfortunately, Noah’s symptoms returned as soon as we resumed formula. 

At that point, Noah had spent nine days on the pediatric floor without improvement and CHOP had ruled out a viral infection, so they decided to transfer Noah to the Gastrointestinal floor and to perform a colonoscopy and endoscopy, which revealed that he has Neonatal Onset Inflammatory Bowel Disease. CHOP placed Noah on medication called Sirolimus and shortly thereafter he began to improve and was able to finally tolerate small feeds through an NG tube. 

Once he reached his goal volume of formula through the NG tube, CHOP resumed small volumes of formula through bottles, Noah rapidly improved, and he has been an eating machine ever since! After 56 days at CHOP, we were finally able to bring Noah home to his big brother, Luca. Noah takes Sirolimus daily and has no restrictions. He is a happy, healthy 10-month-old and we are forever grateful for his Very Early Onset Inflammatory Bowel Disease (VEO IBD) team who continue to care for Noah to this day, and the incredible CHOP nurses and staff.

We are raising money and getting active to create awareness and help create hope for children with IBD. Join me on the journey for a cure!

Why Should You Join?

• IBD is growing at a rapid speed: Inflammatory bowel disease is the fastest-growing autoimmune disorder in children younger than 5.
• Too many kids are suffering: Each year, the Center for Pediatric IBD at CHOP treats more than 1,800 young patients who suffer from belly pain, intestinal inflammation and other symptoms I had!
• Breakthroughs need funding: In the past few years doctors have had an explosion of knowledge about the genetics of IBD and expanded treatment options. Today, expert gastroenterologists, geneticists and researchers work together to evaluate my DNA and microbiome with the goal of developing personalized medicine for me. Walk for Hope funds these discoveries – taking us one step closer to a cure.

How Can You Help?
Join us or donate today and help change the lives of children like me with IBD.

Thank you for your support!