Could you design a super-trike to keep Summer out of a wheelchair?

The Argus: Summer Stokley and her beloved ScuttleBug trike Summer Stokley and her beloved ScuttleBug trike

A Brighton four-year-old with a rare brain condition needs a new trike to stop her from ending up in a wheelchair.

Summer Stokley, of Auckland Drive Brighton, is dependent on her ScuttleBug tricycle to get around, go to school and keep well.

But the youngster – who suffers from the rare neurological disorder Rett syndrome, meaning she cannot talk or walk unaided – has now outgrown her trike.

And her family is struggling to find a suitable replacement to help stall the progress of her disorder.

Her parents Sarah Donnovan, 31, and James Stokley, 34, said that the trike has helped her to lead a normal life .

Carpenter James said: “If she doesn’t keep having the ScuttleBug or something similar she will end up confined to a wheelchair.

“The ScuttleBug is her lifeline. She can’t walk or talk but she takes this everywhere. There is nothing else like it. We haven't been able to get anything suitable on the NHS.

“It has been really great at keeping her mobile.

“As well as giving her mobility it is also helping prevent some of the symptoms associated with Rett syndrome.

“By strengthening her back it is preventing scoliosis – curvature of the spine.”

A family friend has already extended the trike – usually intended for toddlers from one year old – but Summer has now outgrown the frame and it cannot be extended any further.

With the help of her trusty tricycle, Summer can join in playing with her friends at Downs View School in Woodingdean.

“It means she’s able to do what she wants and join in,” said James.

“Otherwise she’d be sat on the sidelines.

“It has made her whole life better and she loves it. I don’t know what we’ll do if we can get her a bigger one.”

Rett syndrome is a rare neurological disorder which affects mainly girls, often caused by a chromosome mutation.

It is usually only diagnosed at around aged one and only half of people with the condition will be able to walk by the time they reach adulthood.

The progressive condition causes profound physical and learning difficulties leaving sufferers totally reliant on others for support.

It can also cause epilepsy, and chronic spinal curvature and breathing and feeding difficulties are also common features.

Summer’s family have raised more than £1,000 towards replacing her trike with a bigger one – but cannot find anything on the market and need the help of businesses or a manufacturer who might be able to help create a specially made one.

l Anyone who thinks they can help Summer’s family to create a new mobility vehicle for her should contact The Argus newsroom on 01273 544519 or email emily.walker@ theargus.co.uk.

Comments (7)

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9:49am Mon 10 Feb 14

pjwilk says...

Bless her,I hope someone will come up with a solution to her problem.If it comes to donations to finance it ,I for one will contribute.
Bless her,I hope someone will come up with a solution to her problem.If it comes to donations to finance it ,I for one will contribute. pjwilk

10:52am Mon 10 Feb 14

aoife303 says...

I recommend looking up the charity DEMAND, who design bespoke mobility equipment. Not sure if a URL will get through the filters, but it's www. demand . org .uk - if the family are checking comments. Sounds like the work you need would be right up their street!
I recommend looking up the charity DEMAND, who design bespoke mobility equipment. Not sure if a URL will get through the filters, but it's www. demand . org .uk - if the family are checking comments. Sounds like the work you need would be right up their street! aoife303

12:10pm Mon 10 Feb 14

clubrob6 says...

Time and time again lately we see operations ,equipment etc not available on the NHS surely with all the BILLIONs this government gives away to countries some of which don't need it should be directed to help our own people.Sometimes charity should begin at home.
Time and time again lately we see operations ,equipment etc not available on the NHS surely with all the BILLIONs this government gives away to countries some of which don't need it should be directed to help our own people.Sometimes charity should begin at home. clubrob6

2:14pm Mon 10 Feb 14

The Real Phil says...

As the e-mail address doesn't appear to work better post here. The Rehabilitation Engineering Service at Chailey Heritage Clinical Services are a world leader in this field, and they are local.
As the e-mail address doesn't appear to work better post here. The Rehabilitation Engineering Service at Chailey Heritage Clinical Services are a world leader in this field, and they are local. The Real Phil

4:00pm Mon 10 Feb 14

Shamy24 says...

Thank you everyone for your information, we have had a positive response from Demand so will keep you posted.
Thank you everyone for your information, we have had a positive response from Demand so will keep you posted. Shamy24

9:47pm Mon 10 Feb 14

wippasnapper says...

clubrob6 wrote:
Time and time again lately we see operations ,equipment etc not available on the NHS surely with all the BILLIONs this government gives away to countries some of which don't need it should be directed to help our own people.Sometimes charity should begin at home.
the NHS rely on mobility firms to supply the equipment so if mobility dote have it u dote get it.
[quote][p][bold]clubrob6[/bold] wrote: Time and time again lately we see operations ,equipment etc not available on the NHS surely with all the BILLIONs this government gives away to countries some of which don't need it should be directed to help our own people.Sometimes charity should begin at home.[/p][/quote]the NHS rely on mobility firms to supply the equipment so if mobility dote have it u dote get it. wippasnapper

10:05pm Mon 10 Feb 14

wippasnapper says...

Just a thought if the frame can’t be extended any further how about adapting the front with bike frocks so a larger wheel can be fitted and larger wheels fitted to the back so in time as she grows larger diameter wheels can be fitted.
Just a thought if the frame can’t be extended any further how about adapting the front with bike frocks so a larger wheel can be fitted and larger wheels fitted to the back so in time as she grows larger diameter wheels can be fitted. wippasnapper

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