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bobbie santa

Bobbies Story.

Bobbie is a lovely 8 year old and has Congenital Myotonic Dystrophy. She is a happy little girl who adores singing and dancing, and certainly a character.....

In the last three years Bobbie has learned to run, sign and talk, something that we were told she would never do. It has given her so much confidence being able to join in and take part in things that she now thinks she can fly!
 
She is beginning to learn how to read although writing is a huge problem. However she is brilliant on her Ipad and can communicate well so not too much of a worry. She has a great sense of humour, and is a very special little girl.
 
Like all princesses she can be stubborn, but mainly she is a bright, funny little girl. Other than having to have Bipap through the night we do not have too many other problems at present.
 
For her to lose any of the skills she has worked so hard to get is unthinkable. We would not change her for the world because she is Bobbie and we all love her. What we would like is a treatment to stop this terrible disease in its tracks before its too late.
 
For her and all her special friends x
 
Bobbies Mummy, Kathy, runs the Families In Action group. A place to talk to other families living with Congenital Myotonic Dystrophy in a safe, CLOSED Facebook group.