This is Sophie, she is my beautiful 11 year old daughter. 9 years ago she was diagnosed with the life limiting condition Spinal Muscular Atrophy type2. For which there is no treatment or cure. It is a neuromuscular degenerative condition that wastes away all the muscles in the body. This includes major organs like the lungs and heart, other muscle groups in arm, legs and torso. She has never been able to walk. Life expectancy isn't great. Till now she has been reasonably healthy but in the past 6 months she has become a lot weaker. Even needing 2 hands to hold her spoon. She has gone through hell and back with operations to correct the curve in her spine, she's had full spinal fusion with rods and screws holding her in place. Hamstring release and so on. Still only 11 she is always smiling. Not knowing her fate she lives each day as it comes. I am a single dad, looking after her by myself. Sophie needs constant round the clock care. Yes sure, she has a PA for 12 hours per week to do some personal things but the rest of the time she has to put up with me.
I am fund raising to raise enough to cram in as much life experience in to her shortened life as one could in a usual life span. She needs wheelchairs, hoists, profiling bed with special mattress, adapted transport, adapted housing etc...the list goes on. She can't do the things other children do and i can't take her to do the other things she might be able to do if we had access to it. I am auctioning things on eBay if you would like to take a look and selling things from in the home that we can do without. But, I know this wont amount to much so am asking for some help to reach our goal of £40,000. This is actually a drop in the ocean to what we actually will need. Her last powered wheelchair cost £31,000! She has had 3 chairs so far as she's grown. All fund raised because the NHS do not supply the type of specialised chair she needs. the basic chair they provide is a joke. Thank you for reading.
Sophie's Dad