Our Sunshine Sophie.

Sophie is our wonderful daughter who has an extremely rare condition called " Congenital Muscular Dystrophy Merison Deficient." (CMD). This is a fatal muscle wasting condition. It means she has low muscle tone which makes her very floppy and she has to spend most of her time in a wheelchair.

This disease attacks all of the muscles progressively weakening them and destroying them.

She is losing her ability to walk as she grows older and heavier as her muscles are unable to cope with the greater strain. Sophie has already had serious falls resulting in broken bones due to this weakness. As Sophie's muscles deteriorate she will become completely wheelchair bound.

The condition also affects her respiratory muscles and in the future she may need to rely on oxygen ventilator for support. In time the disease will attack the muscle of her heart.

Sophie suffers from Scoliosis which is a unnatural curve of the spine. In CMD Scoliosis develops because of the weakened spinal muscles are unable to support the spinal column. Because of this Sophie is facing major spinal surgery. Sophie's spine has a 47 degree curve and at present she wears a back-brace 10 hours everyday.

At present there are no treatments and no cure. The doctors don't know how long we will have our beautiful daughter in our lives.

Unlike some other more known muscular dystrophies there is a lack of patient histories. This has made it difficult for the doctors to confidently predict the course of Sophie's devastating disease.

So many days we have had to sit and watch Sophie struggle so hard to simply move her body. We try and help her find some comfort when she has severe pains from her back and hips. As parents we are helpless to change any of this life Sophie has been given.

Because of this we want to give the very best to Sophie and make sure every day counts.We have set up a personal Fund for Sophie.We are trying to supply her with the things that will help make her life easier and as comfortable as possible.

Our aim is to raise funds to pay for life enhancing equipment/activities and adaptive clothing.

Sophie is a very special girl who has an infectious energy. We are so proud of her and love her deeply.

Please become a member of Sophie's site and show your support.

Thankyou.

Sophie see's you are visiter

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