This is quite a long post but please take a couple of minutes to have a read. About 3 weeks ago I was contacted by a forum member and asked if we would consider doing some fundraising for someone that needs a bit of help. The forum member told me about a young lad called Ollie and his parents Les and Jane. She asked if there was any chance that we could put our heads together to raise so money for this young lad. He took a turn for the worse just before Christmas and his life is now very limited. His parents need a special hoist for him so he can use his hot tub which he desperately needs for his rehab. He has major brain surgery ahead and he loves being in water. Please be clear that his hot tub is quality of life for him.
I got in touch with his Mum and asked if I could go over to have a chat with her. I had the most amazing meeting with the lovely Ollie and his fabulous parents Les & Jane. I have never been so humbled in my life. Here is Ollie’s story.
Ollie is 16 years old and has the mental ability of a 6-18 month old child. He is severely autistic and also has severe epilepsy. In February 2010 he was taken into Bath RUH after suffering a prolonged seizure. At first it was thought he had suffered a stroke but it was actually a form of encephalitis, which is a viral infection on the brain. (http://www.ninds.nih.gov/disorders/r.../rasmussen.htm ) He was very poorly but made a good recovery, however his left side was left damaged and he is no longer able to use his left arm, apart from for clapping! This has proved difficult for him in his mobility and hydrotherapy was introduced as a way of exercise in a way he did not realise what was happening, he absolutely loves being in water and is a very happy young man whilst in there. Jane’s parents gave them some money in October 2011 to buy a hot tub which he used almost on a daily basis and it was helping with his exercises.
In November 2011 Ollie suffered another prolonged seizure which this time resulted in his lung collapsing and he also had pneumonia. He was ventilated and he and his parents were in the children’s intensive care unit at Bristol Children’s Hospital for over 2 weeks and then another 2 weeks rehab in Bath. For 3 days it was touch and go, very frightening for them all. He defied the medical profession by a) surviving and b) leaving hospital a lot sooner than expected. However whilst we were in Bristol we received a diagnosis of Rasmussen’s Encephalitis. This is a life limiting and life threatening diagnosis. It affects the left side of the brain which controls movement, balance and coordination. Sadly it is clear that some reduction in his mobility is already happening. The right side of Ollie’s brain is also shrinking, quicker than was thought and as such he has to have brain surgery in the next 6 months to separate the two halves of the brain. It is hoped that this will stop the serious seizures which happen every 2 months and always result in going too hospital. It sadly will not stop the Rasmussen’s which will take away the little abilities Ollie has. He will end up in a wheelchair and will have to be peg fed, a tube into the stomach, as he will not be able to chew or swallow. The rehab for the surgery will be at least 3 months in hospital and it can take up to 2 years for a "normal" person to be back where they were prior to the surgery. The need to be able to get Ollie in and out of his hot tub is huge, they also need to be able to remind him of something that he loved greatly but also the exercise and rehab point of view is huge.
Both parents have back problems and Jane has had to go into hospital to have her spine fused. As Ollie as grown older he has got bigger and getting him in and out of the tub is proving a problem. They really need a hoist. When they first decided that it was the way forward they thought they would need around £750. But that figure was just to order it. The true cost of the hoist is near £4000. On top of that, each room in their house will have to be fitted with hoists in case Ollie has a fall around the home following a seizure. The Management and staff of Wiltshire Bikers would dearly like to help this family out.
For the past 13 years Les & Jane have worked tirelessly to raise money for OTHER people’s disabled children. Jane works as a support worker for disabled adults and in her "spare" time raises money and support for HCPT (handicapped children’s pilgrims trust), MOVE which is a specialised physiotherapist and the North Wilts Holiday Club. Which take kids like Ollie on holiday so that the parents can get some respite as well. In the past Jane and Les have run Marathons, Organised sponsored walks, dances, parachute jumps to raise money for someone else.
We’ve had some ideas in the Staff team which include a bike stuff sale with some of the proceeds going toward the fund, a sort of point to point where the entrants get as many snaps of them in front of village name signs over the course of a month, paid rides, a joint WB car boot sale, bucket collections on 4 Wednesday nights in the summer. But we need some more ideas. So it’s over to you lovely lot. You guys have been fantastic in the past when it comes to supporting causes and we hope that you will get on board with us on this one. Whilst the staff team are happy to take on the organising of the fund raising, we obviously would welcome any help that you folks may offer.
