Hello Friends and Family,
On April 23th, 2017, the IBD Family Research Council, of which we are members of, will once again be sponsoring the 8th Annual Walk/Run for Hope 5k to support pediatric IBD Research at The Children's Hospital of Philadelphia at The Philadelphia Naval Yard (Navyyard.org ).
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 world class doctors at CHOP who are 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” 5 nights out of the week in order to stop the inflammation in her gut and to minimize the symptoms of this often debilitating and painful disease.
Sydney has been in remission for 6.5 years now and we couldn’t be happier, but as she gets older, she notices people staring at her. This past September, we started taking her tube out during the day so she only wears it at night now. We worry about what the teenage years will bring when she will be more independent yet doesn’t want to be any different than her peers.
We hope and pray a cure will be found soon so Sydney or any other person doesn’t have to suffer physically as well as psychologically with Inflammatory Bowel Disease.
All the money raised at this event will go to pediatric IBD research at CHOP in hopes to find a cure. 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. 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 April 23rd when we take steps to find a cure for IBD.
All our love,
Amy, Keith, Sydney, and Chase Jones
PS. This picture was taken at a Nestle factory when we were given the VIP treatment as guest speakers for two town halls. Nestle makes the formula Sydney has been taking since she was 4 years old. Sydney had to where protective gear for our plant tour.