Paul and I, along with 15,000 other crazy people, are challenging ourselves by cycling the ´L' Etape du Tour' in July. This cycling 'sportive' is a gruelling 135 kilometres in length, covering 3 mountain passes with an elevation gain of 4600 meters (15,000feet). It mirrors the same course ridden by the pro cyclists in the Tour de France, where it is regarded as the ´queen stage', the most difficult stage of the tour. As well as our personal goals, and dealing with a back injury, we have the extra motivation to complete the ride on behalf of our nephew Rowan.
Rowan sustained an injury during his birth where his oxygen supply was cut off. It damaged some of the parts of the brain responsible for movement leading to cerebral palsy. His type of cerebral palsy is called dystonia or dyskinesia. This means the pathways between his brain and muscles are disrupted and sometimes the brain selects the wrong muscles or decides to try switching them all on at once. It also means that the muscles don’t always communicate with the brain to tell him where his limbs are in relation to things.
One proven way to help the muscles and brain in children with this type of movement difficulty communicate better is a specialist Lycra suit. It acts as a second skin, providing extra feedback to aid proprioception. The suits are specially made and measured to each child and contain extra support in areas specific to the child’s needs. For example in the trunk to make independent sitting more possible without switching all the other muscle groups on and in the pelvis and hips to give support and encourage the hips to flex out rather than allowing the larger ‘bully muscles’ to take over and pull the legs towards each other. Long term use of these suits can help rewire the brain to find the correct pathways to elicit the functional movement it actually wants to make.
There has been noticeable benefit with a suit that was donated to him, but as it was originally made for another child it doesn’t provide quite the correct support specific to Rowan’s needs and is not a perfect fit. NHS rarely provide these suits as they cost hundreds of pounds and we have not been able to secure funding for one.
Rowan is so bright and so motivated to want to move and play and as he grows is getting increasingly frustrated that his body won’t move in the way he asks it to.
He works so hard and is so determined to overcome the challenges he has been given that we want to continue to provide him with as much opportunity as possible to do so.
We, and Rowan's parents Rachel and Alex would be thrilled if you would donate to Rowan's cause to buy him the Lycra suit. This suit costs approximately £700, but any extra money raised will go towards other things that he needs to help him.