During the following years x-rays were done again because of pains in her joints. Each x-ray picked up diaphyseal aclasis and it took them 3 years and 2 months after the first x-ray to tell me. The doctors could not tell me much, they just said it will get worse, and how right they were. A year after being diagnosed she has had surgery in 3 different places. The lumps and bumps popped up all over the place.

Today Sonia has had her 6 week check up and they have mentioned more surgery on her leg, wrist and hand. Before, they said they would never operate on her hand. Her rib cage might have to be done again. They found a lump today on her lower femur at the back and he only checked because her legs tingle and go numb. He said they do not normally grow there.

They have answered all my questions except one. Why my daughter? I feel cheated and I keep wondering what happened to that baby girl that I gave birth too. I still have trouble accepting her condition. I cannot believe that she was that 1 in 50,000. Why couldn't it have been me instead? The first operation was the worst day of my life. I knew what to expect and what to ask and do because of a very special lady called Dawn Searle. I could not have got through without her, she was my rock. I clung to every word she said. She explained everything from day one to the 6 week check up. I have got the doctors convinced that I am an expert on this condition. I told them all what Dawn has told me. She is one very special lady and I would like to take this opportunity to make a public thank you so that everyone knows that she is an absolute gem. She was a tower of strength to me and a real inspiration to all. She is a true credit to the support group. Thank you Dawn and I could not have got through this without you.

Best Wishes,

Neelam Ball of Tamworth.

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