Supporting Team IBD Kids of Mount Sinai Hospital in NYC
Completed the NYC Marathon on November 2nd, 2008 in support of Team IBD Kids
I have completed my fourth marathon, the NYC Marathon on November 2nd, 2008. This marathon event is a “must do” for most marathoners. For me, always a Brooklyn Girl at heart, it was quite special. I ran this event in support of the Leukemia and Lymphoma Society, as I have for my past three marathons with the additional goal of raising money for Team IBD Kids. I was joined by my lifelong friend, Debbie Shapiro in this fundraising effort. To support Team IBD Kids please
donate now.
What is IBD?
Crohn’s Disease and Ulcerative Colitis, known as IBD, are the most common chronic and serious gastrointestinal disorders affecting children. Both Crohn’s and Colitis tend to strike during childhood at an average age of 12 years old. The cause of these conditions is still unknown. UC can be cured by surgery to remove the entire large intestine. CD can not be cured by surgery. Both are treated with a variety of medications and other therapies.
My family’s personal story with IBD
At the age of 10, my daughter was suffering from chronic abdominal pain, weight loss, and a complete loss of appetite. My husband, having suffered with serious gastrointestinal problems his entire life, suspected that there was a serious problem and was determined to find an answer.
The answer given to us was Crohn’s Disease. While it was in some ways good to have an answer, it was the beginning of journey that we believe families and children should not have to take. We were told this was a life sentence for our daughter and that she would need to be on medication for the rest of her life. There was no cure.
We will never forget the day that we sat in the doctor’s office and he told our 10 year old that she would never be cured. Never. The shock on Melissa’s face and our gut wrenching reaction to her response will not be forgotten. This news was followed by trying a series of different medications, potion after potion, trying to find a combination of medicines that would finally help her. Everything from steroids to chemotherapeutic drugs also used to treat leukemia. Melissa, being just 10 years old, had never before swallowed a pill. We had to smash the pills and bury them in sherbet to try to get them down. You can only imagine how upsetting this felt.
The next 2 years were filled with a series of more medicines, hospitalizations, and intravenous medications which finally gave some relief but was soon failing to work for her. When all else failed, we were told the one thing that a parent of an IBD kid dreads, your daughter needs surgery.
When Melissa was 12 years old, I walked with her into the surgical area of the hospital just before surgery. She looked up at me and asked me “why am I the only child in here?” What could I say? I just choked back the tears and smiled. As any parent would if they could, I just wanted to leap onto that gurney and do this for her…but this was one thing I couldn’t do. All I could do was just give her my love and smile.
Recovery from the surgery was long and difficult. Melissa missed over a month of school. Missing a great deal of school for an IBD kid is commonplace. Thankfully, she took everything in stride and excelled in school regardless of her illness and troubles. She was doing better post surgery for a year or so and then she became chronically ill again in the fall of 2006. We went for a second opinion with a top GI doctor in NYC. After a careful evaluation and a series of tests, one year ago Melissa was given a clean bill of health and taken off all medication. Once she came off medication for a period of time her health began to improve. Thank G-d, it was a miracle!
Five years of caring for our sick daughter, numerous medications, hospitalizations and major surgery has changed our lives forever. We are forever grateful for Melissa’s new lease on life but we will never forget what it was like to have a child suffering from this terrible illness. I dedicated this marathon fundraising effort in honor of my daughter Melissa. She showed us the meaning of courage and optimism throughout her ordeal. She is a role model for other children suffering with IBD and other challenges in their lives. She has turned her challenges into triumph and has grown into a fine young woman who writes and sings beautiful, uplifting songs of hope and encouragement. You can hear her music by visiting www.myspace.com/melissasperber.
Imagine what it is like to be a kid with IBD:
• Eating becomes a struggle and not a source of enjoyment like it is for everyone else
• You are not like all the other healthy kids who eat anything they want, you are different
• Frequent trips to doctors and hospitalizations
• Needles and IVs become commonplace in your life
• During the hospital stays you are surrounded by sadness and other seriously ill children
• Having a lowered immunity you are prone to catch other illnesses more easily than other children
• You often become labeled as “the sick kid”
• It is not uncommon for normal growth and the ability to mature to be stunted because of your illness,
the results
of which
many children carry into their adult life
• Missing a lot of school causing added stress and pressure to try to catch up
• Needing special permission from the school to use the lavatory when needed because of the frequency
• Swallowing dozens of pills trying to hopefully find a combination that works
• Receiving intravenous medications that are administered in the hospital
• Living with the threat of major surgery
• Living with the permanent scar, both physically and mentally, after surgery
Having a child with IBD is a life changing experience, bringing a great deal of anxiety and stress to the families who have been touched by this. Please help support families who are suffering the way our family did. Please make a generous donation to Team IBD Kids. Donate now.
To Donate by check: Check payable to: Team IBD Kids (Downloadable pdf form)
Team IBD Kids —
THE MISSION
The mission of the Children’s IBD Center at Mount Sinai is to provide state of the art comprehensive medical care, in a compassionate environment to children with IBD and their families. The center provides:
• On-going educational lectures and support groups
• Website
• Newsletters
• Trained parent volunteers who are available to talk to families
• Ongoing research
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