Thursday 29 January 2009
Laura my Miracle Mosaic
Edwards' Syndrome is an extremely serious chromosome disorder for which there is no known cure or effective treatment. On average one baby a day is born in the UK - about 400 babies per year are born with either trisome 13 or 18.
My story is about my daughter Laura. She was born in 1976 with 18 Mosaic trisomy better known as Edwards' Syndrome where 84% of her body cells were affected.
Survival is rare, most similarly affected children die before celebrating their first birthday.
Laura is, as far as we are aware, the eldest person on record to survive with this disorder, which makes her very unique.
My book covers almost two decades of my tales of endless struggles with Laura's constant health problems: some life threatening. It also covers the medical insensitivities, local government indifference and the continuing battles with inscrutable bureaucracy that I experienced.
I write about teaching Laura the most simple of tasks through to the most basic independent skills and not least skills of communication.
Armed only with inexhaustible love, hope and resolute determination my story moves on, telling how I had to cope with becoming a single parent and the sense of isolation and frustration with the chronic lack of financial funds.
I cover many issues of interest. Laura's special equipment (that we never had), the respite care (or the lack of it) and the council house renovations that turned to disaster and more.
Many humorous events are recorded with also Laura's amazing achievements against the prognosis of nil survival.
My story is about my daughter Laura. She was born in 1976 with 18 Mosaic trisomy better known as Edwards' Syndrome where 84% of her body cells were affected.
Survival is rare, most similarly affected children die before celebrating their first birthday.
Laura is, as far as we are aware, the eldest person on record to survive with this disorder, which makes her very unique.
My book covers almost two decades of my tales of endless struggles with Laura's constant health problems: some life threatening. It also covers the medical insensitivities, local government indifference and the continuing battles with inscrutable bureaucracy that I experienced.
I write about teaching Laura the most simple of tasks through to the most basic independent skills and not least skills of communication.
Armed only with inexhaustible love, hope and resolute determination my story moves on, telling how I had to cope with becoming a single parent and the sense of isolation and frustration with the chronic lack of financial funds.
I cover many issues of interest. Laura's special equipment (that we never had), the respite care (or the lack of it) and the council house renovations that turned to disaster and more.
Many humorous events are recorded with also Laura's amazing achievements against the prognosis of nil survival.
- This book was partly written to give inspiration to families and carers alike its prognosis would not be lost on many other people from all walks of life, where readers could relate to the individual events.
- A deeply moving story, truly an amazing rare and inspiring account of one mother's journey into the world of a unique disability that concludes with a heart-breaking decision that will not fail to touch the soul.
My book also contains interesting family photographs, a five page information section on chromosomes and genetics, plus helpline numbers.
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