Becca's Wish to Walk
I'm Rebecca (Becca). I was born at 28 weeks by emergency caesarean section with my twin sister Charlotte (Lottie). I was the larger twin weighing a huge 2lb and Lottie weighed 1lb 8oz. I was a very feisty little girl managing to pull out my ventilator tube at only 2 hours old!
I have spastic cerebral palsy affecting all my limbs but my sister is fine. Although I can walk in a walking frame, with a sling, and can roll and move around on the floor I have to be hoisted in and out of equipment at school. I only attend a mainstream school with my sister three days a week at the moment (special school the other two days) but I would love to attend there full time.
Unfortunately hoisting takes me out of the classroom a lot so I can't spend time with my friends during school breaks. I also find it very undignified to be hoisted on and off the toilet and would love to have some dignity and be able to transfer from equipment to equipment/toilet myself. This would also give me independence. I would have time to play outside with my friends using a simple walking frame or crutches and attend school with my twin sister full time.
I have been accepted for the Selective Dorsal Rhizotomy (SDR) surgery at the St. Louis Children’s Hospital in Missouri. In their letter the surgeon wrote: “ Her spasticity will be permanently reduced, her sitting and standing postures will improve, her transitions between postures will be easier and faster, her balance and level of comfort will both improve. We feel that Rebecca has a chance to walk with a walker and we will assess her ability to walk using crutches.….We strongly recommend that she have the rhizotomy surgery.”
The surgeon will open my spinal cord and cut the sensory nerves that are sending the signals to make my leg muscles abnormally tight. After the surgery I will need intensive physical therapy for at least one year to strengthen my legs and re-learn how to use them.
Unfortunately, although this surgery is available from the NHS, they exclude children who are classified as Level IV and V (only considering the more ambulatory Levels I to III). I am classed as a Level IV.
St Louis Children's Hospital assess each child individually and consider the benefits and families expectations of the surgery before accepting a patient. As this is in America we have to pay for it privately as the NHS will not contribute to the surgery.
The cost of the SDR surgery is $46,245 (around £32,000) plus tendon lengthening of approximately $10,000 (around £7,000). In addition to this there is the travel and accommodation costs for one month in St. Louis, intensive physiotherapy for twelve months and specialist equipment needed for physiotherapy at home and school. These additional costs amount to £40,000 and these are not provided by the NHS.
Anything you can do to help me fulfil my wish is greatly appreciated. My website is http://beccaswishtowalk.co.uk
All the money we raise will be held by the charity Tree of Hope. They will then pay the hospital, therapy centre and equipment suppliers on our behalf.
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Tree of Hope reserves to use these funds for any purpose stated in the parents charter, including but not limited to, medical treatment, surgery and therapies and related travel expenses, medical and exercise equipment, childcare, home adaptations and the cost of vehicles designed for the disabled.