The operation we are saving for is called Selective Dorsal Rhizotomy or SDR for short. It involves cutting the nerves that cause the muscles to tighten up – after surgery Ella will no longer have this tightness or “spasticity” in her legs but will need a lot of physiotherapy to rebuild her strength and teach her how to walk properly.
The surgeon in the US, Dr Park, has performed this operation over 2,000 times over the last 20 years – including 50 children from the UK - so, whilst it is relatively unknown, the team are highly experienced and have a 100% success rate.
A form of this surgery is available in the UK but they currently only operate on children already able to walk so would not consider Ella. They are hoping to set up a unit similar to the one in America but this will take time and the earlier we can have the surgery the better the results will be and the less need for future surgery.
The following link gives an overview of the operation performed
http://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htm