Pheobe

  • Phoebe is 13 years old, she was born on September 7th 1998 weighing 9b 9oz, it had been a normal pregnancy with no problems detected at any of the scans, we had no idea she was to be born with any problems at all, it was quite a shock. As soon as Phoebe was born it was obvious from the start all wasn’t right, her left foot was completely turned in almost at a right angle and her left ear was folded up like it had been squashed. We knew it was serious the minute we tried to feed her, the milk just stayed in her mouth and by then her colour changed and she was taken to special care. Our local hospital were unable to cope with how poorly she was so she was rushed to Guys hospital in central London, for 11 days they struggled to keep her alive and maintain her airway, it was on day 11 they performed an emergency tracheostomy, this was what saved Phoebes life. It was thought Phoebe would need to be ventilated for several days to give her a chance to recover, but just 24 hours later she had improved so much they took her off the ventilator, my girl is a fighter and has been fighting ever since. We spent 6 weeks at Guys before being transferred back to our local hospital she was finally allowed home 2 weeks before her first Christmas .We still didn’t know what was wrong with Phoebe she spent much of her first year in and out of hospital with severe chest infections, she also had an operation to fit a gastrostomy feeding tube because she was unable to swallow. At 14 months we saw a genetics specialist who told us they thought Phoebe had Moebius syndrome of course this was just a name of her condition we still didn’t know and still don’t know what caused it. Looking after a child with special needs taking her to no end of appointments ,learning to care for her tracheostomy tube and change it was so hard but Phoebe showed such courage and every thing they said she wouldn’t be able to do like walk and talk and see and hear she did ,it may have taken longer than others it may be a struggle but she has aways amazed us with her determination. Phoebe had her tracheostomy removed in March 2007 a day we thought would never come ,she has improved so much since then ,her speech is coming on really well and her swallow is getting stronger every day ,she can now drink chocolate milkshake with no problems and enjoys mealtimes very much she is eating more of her meals everyday. She does drool excessively and is very sensitive to sunlight and noise, she still has problems with her foot and may require more surgery, she has low muscle tone and doesn’t like walking too much ,she gets very tired. Phoebe goes to a local special needs school she’s been there since she was 2 1/2 years old, it is an amazing school and the results for Phoebe have been outstanding, she has learnt to read and write, is excellent on the computer, has taken part in school council meetings and is in the school choir. Phoebes development is delayed due to her physical difficulties and her speech difficulties, but she is very intelligent and never ceases to amaze everyone that knows her. She is an expert Makaton signer and nothing made me more proud than when she stood up at Christmas in-front of a full congregation and signed along to a Christmas reading and carols that were sung. Phoebe is a very social girl she forms wonderful relationships with her siblings, friends, family and teachers she touches everybody’s heart that meets her,i am so proud of her for all she has been through and all she achieves ,she is a shining example that proves having special needs doesn’t stop you living a full and happy life, i have no doubt that although there be obstacles along the way she will exceed in whatever she does. None of us know what causes Moebius syndrome, we must continue to raise awareness so people gain understanding and accept people with Moebius into their lives and in order for vital

 

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