PLEASE SUPPORT ME TO HELP OLI:
Introducing Oliver, my friends little boy:
Oliver is a cheeky, funny happy 2 year old, he loves his older brother and sister and enjoys bossing them around very much!
When Oliver was around 11 months old we had a routine health visitor appointment where we discussed the fact that Oliver didnt weight bear on his legs at all. Oliver had learnt to sit up unaided at around 6 months but had not really moved much further out of this position, Oliver was not yet crawling or rolling over.. The health visitor suggested that we may want to discuss this further with our family gp which we did.. ...
Originally told perhaps he was being a little lazy Oliver's paediatrician requisitioned an MRI scan and blood tests to try to rule out anything more sinister.. We were quickly advised that the blood tests undertaken had come back normal however, the MRI had revealed that there appeared to be two areas of "damage" and a small area of fluid upon his brain. The paediatrician remained unconcerned and felt that this explained the reason for Oliver's gross developmental delay and suggested perhaps a referral to Great Ormond Street Hospital would be the next step in a year or so..!? We requested that this be reconsidered and Oliver was eventually referred to a Neurologist at GOSH who wanted to requisition further tests..
In April 2017 Oliver underwent and EMG test to see the level of messages to and from his muscles and further blood tests.. At the begining of June we attended the results clinic and our lives were forever changed. We were told that Oliver has a rare genetic condition which called Spinal Muscular Atrophy. The condition affects only 1 in 6,000.00 children. The simple explanation of the condition is that the messages to Olivers muscles are disrupted and result in an inability for his muscles to work as they should. We were told that Oliver will likely always need aids to walk, be that walkers or a wheelchair and that physio would be key in the support to keep his muscle mass to ensure there is no degeneration.
Oliver recently had a great time trying out a new trike made by Tomcat, which is a specialist trike which would provide cardiovascular exercise and keep his muscles active and engaged as when his feet are strapped into the pedals they are moved by pushing the attached parent handle, whilst moving Oliver would also need to keep his balance which would ensure that he is also working his core muscles whilst having fun. Not only is the bike beneficial medically but will provide Oliver with some independence to go out on "his" trike whilst his brother and sister and riding their own. Oliver is physically weak but his character is huge and he is a thrill seeker - he loves going higher on the swing and being pushed faster in his pram..
This trike would make such a big difference for him and would be a wonderful and fun way for him to continue his physio whilst out and about.
The Trike unfortunately is very expensive at a cost of £1,600.00. The bike is adjustable so we are hopeful that it would continue to benefit Oliver and hopefully provide hours of fun for a period of 3 to 4 years..
We would be so grateful for any help you may be able to provide with this to make a little boy very happy..
SO...for every kilometre I take in the marathon on the Sunshine Coast, 20th August, this one is for a cause. For those that know me, I love to be free, love to run and love to cause a storm, which is why, with your help we need to get Oli that trike.....who is in???
PLEASE help fund me!
- Wendy Ryan
- Michael Hill
- Sevina Grob
- Deon Lezar
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