Nottinghamshire, United Kingdom
(1991-September 15, 2008)
Since the age of 7 Sonam lived with her mother sister and brother. Sonam was the oldest of the 3 siblings. Sonam was born in 1991. We live in Nottinghamshire. In the United Kingdom. Beloved Sonam Ahmed ended up in hospital just 6 weeks before her 14th birthday. The primary diagnosis being epilepsy. Four and a half months into her hospital stay Sonam was diagnosed with lafora. As a devastated mother my world had fell apart, Sonam was my right hand person. Words could not express the heart ache and grief I had felt. I felt I had been stabbed in the heart. How could my right hand person have a medical condition for which there was no cure? Sonam loved writing and reading, her handwriting was so immaculate. At her junior school she won the hand writing competition 3 years in a row. Sonam, loved dancing music and makeup she loved dressing up. Most of all she loved spending her mothers hard earned cash on Fashion and jewelry. Sonam was beautiful and vibrant and very popular amongst her friends. My little girl wanted to be a barrister. My little girl had a diary for every year of her life since the age of ten. Sonam was an ordinary girl with extordinery talent. She wasn’t blessed with a life.
As a teenager Sonam went to Chilwell School in Nottinghamshire. My daughter loved school and loved her friends. During the most difficult years of Sonam’s life, when she was doing really, really poorly and she was even unable to make facial expression, her friends continued to visit her. That’s what I call true friendship and commitment from her friends.
During the three years she remained in poor condition. Lafora robbed my child of her liveliness and it robbed her of the precious years of her life. Sonam fought against being in a wheel chair she fought against being fed via a g-tube. During the last 11 months of my daughters life she was completely bed ridden. There was no facial expression and lots of anti epileptic drugs had been tried but there were few that suited her. Sonam ended up in intensive care on at least 3 occasions and just before she died she was pronounced brain dead. My daughter gave up her fight for life on the 15th September 2008. My eyes cry the tears of sadness and my heart weeps for the girl I had hopes and aspirations for.
One day I asked my daughter if there was anything that she wanted that I could buy for her. Sonam’s words were, “I want a life mum and you can’t give me that.” I felt so small I couldn’t give my daughter a life which was a basic human right.
More recently Chilwell School have put up a memorial for Sonam and foxwood special school did the same for her. We, the family would like to thank the schools in being part of Sonam’s life when she most needed schooling. From being a perfect teenager her behaviour became some what challenging and both schools tried really hard with her to keep her in school as long as possible.
We had to move house into a bungalow as Sonam began to struggle to get up the stairs. Moving home into a bungalow was a financial struggle as we had already moved home 16 months ago. Not everyone is in the same fortunate situation as us.
My heartbreak does not stop there. To add to my distress, Sonam’s two younger siblings were also diagnosed with lafora. I brought 3 beautiful children into this world however I did not expect to bury my children during the time that I am alive. The hardest thing of all is that my children want a life, they want to go out in the big wide world and live, and they may never get that opportunity.
– Submitted by Sonam’s mother, Shekeela Ahmed