leemyd
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Daughter: STA-MCA Bypass at age of 9 in 2007
Posts: 18
Herndon, USA, VA, Virginia
Gender:
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Hope your son and family are faring well under such trying times. This response may be late but thought sharing our experience would somehow benefit your son and family.
We confirmed my daughters diagnosis a day before her 9th birthday. Mind you that my sister, my daughter's aunt, passed away from MM only 2 months earlier and it was through her passing that we were able to identify my daughters MM. We decided to be honest and forthright with her but only after her birthday party. We explained to her the disease, the available treatments, and the short and long term prognosis. We didn't hide anything from her and she was part of all the conversations with the doctors. To a certain degree, she was part of the decision process. Needless to say, she matured very quickly. We spent many nights surf the web together, reading the good stories and the not so good stories. I can't begin to imagine, even to this day, what went through her mind and how she coped with the news at her age. Nevertheless, we felt there was no other way, even today as we look back. Two weeks after breaking the news, she was in Stanford in Dr. Steinberg's operating room.
My daughter is in 9th grade now and doing very well. You would never know she has the disease except her scars. She's making straight As in all honors classes and lettered in her swim team in her first season. However, she's not your typical teenager. She's definitely more mature for her age, who sometimes takes things too seriously. Can't blame her since she's reminded often through migraines and daily medications that she's not your typical teenage girl. That said, she's overall a very happy, spirited girl whose courage and strength in coping with her disease both mentally and physically amazes us everyday.
It appears that you live in the DC area. Please do not hesitate to contact me. We'll be more than happy to share with you our experience, provide suggestions, recommend doctors, and even meet to prove to your son that one can receive treatment and do more than well.
All the best.
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