Our Story: A Family's Fight Against IBD

In the fall of 2011, Philip (Pip) and Ellen noticed that their 11-year-old son Jack was eating more slowly, pushing food around his plate and sometimes not eating at all. His yearly physical showed that his overall growth had slowed, and soon he was struggling with severe abdominal pain, diarrhea and fever. That November, Jack was diagnosed with Crohn’s.

IBD is hard to cope with at any age, but it can be especially difficult and isolating as a kid. Though Jack is warm and cheerful, Pip and Ellen knew he was in pain and sometimes overwhelmed by his disease.

The family’s first experience with CCFA was in the summer of 2012, when Jack attended Camp Oasis. Camp ended up being a special place for Jack. He told his parents that for the first time since his diagnosis, he felt “normal” there. Though abdominal surgery prevented Jack from attending last summer, he’s thrilled to return to camp once again this year. 

Like many kids with IBD, Jack and his family have had a lot of ups and downs. One of the most challenging things to cope with is the lack of general knowledge about IBD, as many people don’t understand the severity. Ellen notes that people will say that Jack “doesn’t look sick” – but as anyone close to IBD knows, looks can be deceiving. 

Ellen says that it’s hard on the whole family when Jack isn’t feeling well and the feeling of isolation is only compounded by the sense that many friends and family “don’t get it.” But the community, reassurance and support of other parents they found at CCFA have been incredibly helpful.

Determined to extend this feeling of understanding and welcome to other families, Pip and Ellen worked with CCFA to start pediatric, adolescent and family support groups in their hometown of Atlanta. After only six months, over 30 families regularly attend the meetings. Pip and Ellen also pulled together a team – the Stink Bombers – for the annual Take Steps walk. Last year, they raised over $14,000 in donations – and this year they’re aiming to do even more!

At Jack’s last check-up, his doctor reported he was growing again. Though he hasn’t achieved full remission and is still coping with the disease one day at a time, Jack and his parents have a great deal of hope for a healthy, happy future for Jack and thousands of other kids like him.

You can help raise critical funds for IBD cures and help kids like Jack when you join Take Steps today!