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Aylesbury mum's appeal for specialised bike

Her son Harry, aged 7 suffers from a rare condition called Kleestra Syndrome and has severe develop delay. His mum, Sarah, is hoping to raise money for a specialised tandem so they can go on bike rides together.

Published by Scarlett Bawden-Gaul at 1:55pm 28th April 2020. 3-minute read.

Aylesbury mum's appeal for specialised bike

An Aylesbury mum is hoping for support as she tries to make memories with her family. 

Sarah Johnson has set up a fundraising page so she can get a specialised tandem bike for her and her son Harry who is 7 years old. 

Harry has Kleestra Syndrome, which is very rare and means he has severe global developmental delay, with hearing, visual and speech issues.

HARRY 1

Sarah explained that at the moment it has been very difficult during lockdown:

"We feel quite isolated and alone right now because we don't have help around us... We don't have family around us. 

"Harry doesn't understand that when we are shopping for food he has to stay with me and can't walk anywhere else. He doesn't personal space...

"For the first 9 months of his life he couldn't see a thing. So to teach him to touch things and realise he had limbs was incredibly difficult and I had a lot of help from Ophthalmology. He has had to learn a lot of things in a short time and he is doing incredibly well.

"He has a ribbon that he flicks, his ribbon is all about knowing where his hands and feet are, so Harry doesn't get other people and special awareness."

One thing that Harry, Caitlyn his 9 year old sister and Sarah love getting outside and especially bike riding. 

However, Harry is not safe on normal bikes which means the family cannot go out and enjoy time together. 

HARRY 2

However, Sarah has found a tandem bike that could solve their problems and help them create memories.

Sarah told Mix96 how important this bike would be to them:

"Giving Harry something he enjoyed and helping him develop...We would just create memories and family experiences that people can take for granted. It's something that would be with him for the rest of his life, however long or short that might be.

"Life expectancy is unknown for kleestra syndrome children, because  there are so few in the world it makes putting a life expectancy on Harry very difficult. It is predominantly children because very few live into adult life. 

"Harry has no underlying health conditions that would indicate a short life so this is something we would look at enjoying for the rest of our days.

"We're not precious, if someone has a second hand one or one lying about in a garage we would be happy to have it if they would like to donate it."

The goal is to raise over £6,000 to get the best specialised bike to support Harry and his family.

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