WOW!!!!!!!!! What an amazing piece of love you and your stitchers have made. Anna Mae was quite tearful when she opened the parcel and saw the love that had gone into the quilt. The first thing she said was "Can I take it into hospital with me next week?" as she going in for surgery.
Thank you so much, for the beautiful gift of love you have sent, it means the world.
Anna ~ Mae was diagnosed with CTM in December 1997. I think I had realised there was something wrong, but was living in total denial. After all, Anna was almost 2 years old & still couldn't stand. we had the diagnosis one day & she embarked on her treatment plan the following day. this was very hard for us all, but within a few months she could stand.
she spent the next 5 years having her legs put into plaster every month for a week, but this non invasive treatment seemed to work really well.
There were highs & lows. We were told that she could go blind & deaf & be in a wheelchair full time by her teens.
She has continence problems, which are on going & this does leave her feeling inadequate.
Then In approx 2000, out of the blue & totally unexpectedly, we were called into hospital to see a doctor. At this meeting we were told she had a second & totally unrelated disease called cherabism. we had never heard of this condition. It was explained to us that the bones in Anna ~ Mae's face were being eaten by tumours. She has many benign tumours that will grow aggressively & may leave her beautiful face all disfigured. She had only cut 8 teeth & they are all misplaced in her mouth. Some are upside down, while others are back to front, she even has one to erupt into her nose cavity. Andrew & I, both struggle with this condition & still find it hard to come to terms with.
The problem is the 2 diseases are not compatible with each other. The CMT which is a form of Muscular Dystrophy means her balance is very poor & she has many falls, but the Cherubism, dictates that her face must not be injured. This is because her bones are paper thin & very fragile & the tumours run a risk of malignancy &/or rapid & aggressive growth if they suffer trauma.
Anna ~ Mae is an inspiration to us all, with her zest for life & her courage. She openly tells the general public, that maybe staring or making comments about her teeth just what her conditions are & invites them to ask questions. Making people aware & helping people to understand.
She is a very popular girl in the town & very special to all that know her.
Written by Ann (Anna ~ Mae's mum)