Let's get Becca to St Louis
Becca's Wish to Walk
Rebecca has 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 Rebecca's spinal cord and cut the sensory nerves that are sending the signals to make her leg muscles abnormally tight. After the surgery she will need intensive physical therapy for at least one year to strengthen her 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). Rebecca is 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.