Syd the Kid
Hello Friends and Family,
On October 21, 2012, the IBD Family Research Council, of which we are members of, will once again be sponsoring the 4th Annual Walk/Run for Hope to support pediatric IBD Research at The Children's Hospital of Philadelphia at Veteran’s Park in Hamilton, NJ right off of route 295 (http://www.hamiltonnj.com/content/889/1076/default.aspx).
As most of you know, our daughter Sydney was diagnosed with Crohns disease in September 2010, right before her 4th birthday. In hindsight, we started noticing signs early on. She was an extremely picky eater, complained of her stomach hurting, was scared to go to the bathroom, was throwing up, and then later on, had high fevers and was fatigued quite often. She just wasn’t herself and many people started to notice. After a urine test and x-rays came back negative, she had bloodwork done. Her pediatrician, who happens to have an affinity for gastro intestinal issues, started putting the pieces together and contacted people at CHOP for an upper GI series. The GI series showed inflammation so a double endoscopy was done giving us an exact diagnosis of Crohns.
My mother, Janet, had Crohns so I was familiar with the pain and discomfort she dealt with on a daily basis and didn’t want Sydney to have to go through the same ordeal. By our good luck, Sydney is now being treated by the top Pediatric Crohns doctor in the world at CHOP who is heading research teams to find a cure to this horrible disease. There is no better place in the world where she could be treated than at CHOP. Her current treatment is nutritional therapy in which we insert a feeding tube via her nose into her stomach where she gets fed cans of “formula” every night in order to stop the inflammation in her gut and to minimize the symptoms of this often debilitating and painful disease.
Sydney was one of the lucky ones. It only took roughly 3 months to get an exact diagnosis. Many of the other children suffering from IBD were initially misdiagnosed or went too long with symptoms before getting help. With Crohns, the earlier you start treatment the better. These kids have needed surgery, colostomy bags, and some cannot eat food at all because of the pain in their stomach. Can you imagine little kids going through this!!
All the money raised at this event will go to pediatric IBD research at CHOP in hopes to find a cure so kids like Sydney won’t be in pain or need a feeding tube to keep them in remission for the rest of their lives.
Crohns is the fastest growing pediatric disease in the country. The Family Research Council, made up of families like ours who’s child or children are being treated at CHOP for an IBD illness, have raised to date over $2M . I know that money is tight for many people today, but please know that a large donation is not necessary...each and every dollar makes a difference!! Together, we WILL find a cure!!
Join us on October 21st when we take steps to find a cure for IBD.
All our love,
Amy, Keith, Sydney, and Chase Jones
Return to the Walk for Hope event page.