has anyone got a child with spina bifida

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Tracey - posted on 05/17/2009

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hi kelly thank you for writing..my son matthew is five and a half at present he is not in a wheelchair but doc's say he could be within a year because his left leg is getting bad he needs physio twice a day to try loosen up his knee it's locking at an angle.. matthew also has no bladder or bowel function he still wears nappies and gets a bowel washout done at home every three days..matthew is very big for his age he looks 7 or 8 all he loves doing is playing football it upsets me to think that his football will be taken away from him if he ends up in a wheelchair at present he wears splints on his legs..he is such a loving child i am truly blessed to have him.

Kelly - posted on 05/17/2009

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Hi! I don't have a child with s.b., but one of my daughter's best friends was born with it. Just wanted to post some (hopefully) encouraging thoughts for you. At first they said her feet were paralized (not legs, just feet). She went from a wheelchair to a walker to usually walking with crutches. Occasionally has to use the walker still, and the other day we went on a field trip to the zoo and they just used the wheelchair, but that is the first time I have seen it in years. She is seven, in first grade, very smart. She participates with her class in almost all activities. She has many friends, goes to birthday parties and playdates like any other little girl. She is very small for her age, wears glasses, and wears diapers. She has a lovely smile and beautiful hair. Her friends have grown up with her, her whole life, and never treat her as different, other than looking out for her when she needs some extra consideration (as in "move your chair over so she can get through" sort of thing). By the way, this child is being raised by her grandmother, no father in the picture at all, mother in the military. She has risen to the many challenges in her life in a beautiful and inspiring way, and I hope anyone who reads this who may just recently be facing this situation will take heart, and know that it will be ok. Good luck, stay strong, take one day at a time, and thank God for the miracle that is ANY child born!

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