Ellen and Pip Spandorfer will never forget the day they were told their oldest child, Jack Spandorfer, had Crohn’s disease, a form of inflammatory bowel disease that is chronic and incurable. Dr. Pip (as he is called), a pediatrician who also specializes in pediatric emergency medicine, explained, “For years Jack endured this illness as well as two surgeries. But then it got worse; we found out that Jack’s younger sister, Carly, also had this vicious disease.” Ellen, a psychologist, continued, “When Carly started to present similar symptoms, we got very concerned and took her to be evaluated right away.”
Crohn’s disease is an inflammatory bowel disease (IBD) that causes inflammation, or swelling, across the lining of the digestive tract and can affect other parts of the body as well. Approximately 1.6 million Americans suffer from IBD (Crohn’s disease and ulcerative colitis). Pediatric Crohn’s/IBD affects 80,000 children in the US. There is no cure for Crohn’s disease at this time.
Jack, who is now 14 years old, was diagnosed with Crohn’s Disease in November 2011. Jack has a moderate to severe case and has still not yet achieved full remission. A year ago, Jack switched to the medicine, Humira, and he receives weekly injections, providing him with some relief from the disease.
Carly, who is now 12, was diagnosed in Nov. 2014. Ellen and Pip waited for the lab results, praying that she didn’t have Crohn’s. However, the colonoscopy confirmed what they had feared. Just a few months into Carly’s treatment, they still don’t know how her disease will progress.
Ellen said, “We are hoping that by catching it and treating it early, that we will keep her as a mild case, not moderate to severe like Jack.” Carly, too, receives weekly injections of Humira.
According to the Crohn’s and Colitis Foundation of America (CCFA), approximately 20-30% of Crohn’s patients have another family member affected by the disease, and families frequently share a similar pattern of illness. Statistics also show that 75% of individuals with Crohn’s disease are of Ashkenazi Jewish descent.
Support Group
Living with Crohn’s left the Spandorfer family feeling very isolated, with few people to talk to about what they were going through day to day with Jack and Carly. They contacted CCFA and asked if they could initiate a pediatric, adolescent, and family support group, with both Pip and Ellen being trained to be group facilitators. This would be a place where families could go and discuss symptoms, medications, side-affects, research updates, cutting edge studies, pain management, nutrition, and much more.
“We couldn’t sit on the sidelines; we decided that something more needed to be done for the families that deal with IBD,” Pip explained. “And they love it, particularly the kids as they get to be with other kids that have IBD. I hope this support group will be a model for other communities across the country for kids, siblings and parents.”
In its first year, the group has more than 40 families regularly participating.
For more information about the support group, go to http://www.ccfa.org/chapters/georgia/support-groups/childrenteenparent-support.html
The Crohn's and Colitis Foundation of America's Annual Walk – (http://cctakesteps.org/atlanta)
In 2012, Ellen and Pip became very involved with the Crohn’s and Colitis Foundation of America, GA Chapter and participated in the first CCFA Walk. Each year, CCFA has a Walk in Georgia, “Take Steps for Crohn’s and Colitis,” raising money and awareness for the disease.
On May 2, 2015, CCFA presents its 7th annual walk in Georgia, "Take Steps Atlanta," and Jack Spandorfer is this year's Honored Hero.
“The money CCFA is raising funds programs like the support group, summer camp for kids with IBD, patient and professional education, as well as critical research to find new treatments and hopefully one day a cure,” explained Pip. The Spandorfers have been the top fundraising family for CCFA, having raised more than $35,000 in the past two years. They are aiming to raise another $50,000 this year.
“3 ½ years into his diagnosis and Jack has still not gone into complete remission,” said Shannon Primm, CCFA Assistant National Walk Manager. “There are so many personal questions that remain for Jack, Carly and their parents: Will Jack have to have more surgery? Will he grow? How will this illness affect him when he goes off to college and beyond? Will Carly’s Crohn’s disease become more severe?”
“Jack and his family know that the most obvious, and important, way to get answers to these questions and make life better for future patients is to support CCFA wholly in all of its endeavors,” said Shannon. “Whether it be research in the lab, support groups, or Camp Oasis – CCFA is the main outlet that is trying to find the cure for IBD.”
“The Annual Crohn’s and Colitis Walk means so much for Jack,” said Ellen. “Last year, he had surgery on a Wednesday and on Saturday he wanted so badly to be a part of the Walk that we got him a wheelchair and “broke” him out of the hospital for a few hours.”
“With everything I went through and everything I’ve learned, I’m hoping to make it a little easier for my sister and other kids with this disease,” said Jack. “Through Take Steps and the support group, my family feels so lucky to have the encouragement of other families going through the same things we are, and we love that we can give back. As my dad says, ‘we pay it forward for the next family’.”
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