We Have now got a date for surgery ,me and Robin will fly out to America on Sat 14th May and he has SDR on 17th May !!
About Robin and robinSDReams
Robin was born 8 weeks premature, due to this early birth he suffers from brain damage, and as a result of that it has caused him to have spastic diplegia, which is a form of cerebal palsy.
Robin is now 5 yrs old, due to this condition he struggles with the ability to walk, and this significantly reduces his balance and co-odination. robin now has to endure physiotherapy everyday which starts at 6.30am. His physio includes exercise in a frame, a daily stretching programme, and an hr a day in a stretching frame. robin wears splints and pedro boots and has to have muscle relaxing medicine twice a day. This would be to much for an adult to endure , never mind a 5 yr old child. Robin can manage to move around indoors, but needs help dressing himself, going to the toilet, and help with daily obsticals such as going up and down stairs. Outdoors robin uses a crocodile walking frame for short distances playing out at home and school, and aiding him over uneven surfaces. For longer distances robinis reliant on a wheelchair.
In 2009 we were told of an operation called selective dorsal rhizotomy. This operation helps to reduce the increased muscle tone and spasticity, which causes robin so much pain and discomfort on a daily basis. The benefit of this operation, robin will be able to walk, run, play with friends and lead a fuller life without the aid of medication and having to the pain he has to put up with. he will only need occasional use of a walking frame. This operation is not a miracle cure but it will give his physiotherapy the oppertunity to further develope his underlying muscle stength, and inturn will improve his functional ability. More importantly this operation will significantly reduce the chance of robin losing his already lack of mobility as he reaches adolecence.
This operation is only available in the uk at the Robert Jones and Agnus Hunt hospital, Oswestry. In january robin was assesed by Dr Roberts, who approved robin to be the perfect candidate for this operation. Following this robin began month of targeted training to get him in the best possible position for surgery. The surgery was due to take place at the end of 2010/ early 2011. But when we applied for funding, the PCT (primary care trust) refused to fund the operation. We appealed against this but once again the funding has been refused.
So getting to my next step. The only other option to get robin the operation he so clearly deserves and needs is to take him to america. At the cost of £45,000. Which is why we are now fundraising to get robin over to the states to get him the operation.
On this sight you will find updates on robins progress, also up and coming fundraising event. video diaries of robins day to day physio.
Robin is now 5 yrs old, due to this condition he struggles with the ability to walk, and this significantly reduces his balance and co-odination. robin now has to endure physiotherapy everyday which starts at 6.30am. His physio includes exercise in a frame, a daily stretching programme, and an hr a day in a stretching frame. robin wears splints and pedro boots and has to have muscle relaxing medicine twice a day. This would be to much for an adult to endure , never mind a 5 yr old child. Robin can manage to move around indoors, but needs help dressing himself, going to the toilet, and help with daily obsticals such as going up and down stairs. Outdoors robin uses a crocodile walking frame for short distances playing out at home and school, and aiding him over uneven surfaces. For longer distances robinis reliant on a wheelchair.
In 2009 we were told of an operation called selective dorsal rhizotomy. This operation helps to reduce the increased muscle tone and spasticity, which causes robin so much pain and discomfort on a daily basis. The benefit of this operation, robin will be able to walk, run, play with friends and lead a fuller life without the aid of medication and having to the pain he has to put up with. he will only need occasional use of a walking frame. This operation is not a miracle cure but it will give his physiotherapy the oppertunity to further develope his underlying muscle stength, and inturn will improve his functional ability. More importantly this operation will significantly reduce the chance of robin losing his already lack of mobility as he reaches adolecence.
This operation is only available in the uk at the Robert Jones and Agnus Hunt hospital, Oswestry. In january robin was assesed by Dr Roberts, who approved robin to be the perfect candidate for this operation. Following this robin began month of targeted training to get him in the best possible position for surgery. The surgery was due to take place at the end of 2010/ early 2011. But when we applied for funding, the PCT (primary care trust) refused to fund the operation. We appealed against this but once again the funding has been refused.
So getting to my next step. The only other option to get robin the operation he so clearly deserves and needs is to take him to america. At the cost of £45,000. Which is why we are now fundraising to get robin over to the states to get him the operation.
On this sight you will find updates on robins progress, also up and coming fundraising event. video diaries of robins day to day physio.
