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Christopher Barnsley raised £1,587.6 from 43 supporters

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Closed 21/01/2019

£1,587

raised of £500 target by 43 supporters

Christopher Barnsley

Weʼve raised £1,587 to To help fund a wheelchair bike for Ciara Fowler who suffers with Rett Syndrome

: Ellesmere Port, UK
: Disability support
: Funded on Monday, 21st January 2019

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Story

HELL RUNNER FOR CIARA

With the support of the team at Prime Health and Fitness myself and Andrea have once again been inspired by Neil’s son Michael and this year we have decided to do Hell runner in the North to help Team Ciara again. This time it will be to raise money toward providing a specialist bike so that the Fowler family are able to spend as much time with Ciara as they can, doing something that they all enjoy, which is cycling. For this to happen, Ciara who suffers from Rett Syndrome would have to have a specialist wheelchair bike.

The Van Raam Veloplus, pictured above, will enable them to do this. The cost of the bike is £8000.

Below is the challenge that Ciaras Brother Michael and Dad Neil completed in the summer. And a brief description of what the Fowler family go through living with Rett Syndrome, and what Rett syndrome is.

My challenge will be to climb three of the highest mountains that are often used in the Tour de France. The first mountain will be the Col du Galibier on Monday August 20th. The summit of this mountain is 2645 metres above sea level. The next day I will try to climb Alpe D’Huez and is 1850 metres above sea level. This is the one that I most like watching the professionals race up. The next day I will be attempting to climb Mont Ventoux. The summit of this mountain is 1912 metres above sea level and has three different routes up to its summit. I intend to ride up each of the three routes over 1-2 days.

Michael successfully completed this challenge. A big well done to Michael.

And here is a copy of the post that Neil posted on his fundraising page showing what its like for Neil and his family living with Rett syndrome.

The past year has been Ciara's toughest so far, with the need to have a Gastrostomy feeding tube, worsening seizures and a progression of her spinal scoliosis, which will end up with having major spinal surgery. Only recently, Ciara was admitted to the PICU at Manchester Children's Hospital due to seizures and Pneumonia. We genuinely through at one point that we were going to lose her. Ciara's vulnerability has never been more apparent than over the past year. It is heartbreaking on a daily basis to see Ciara growing up and constantly being unable to do the kinds of things that all children should be doing throughout their childhood and not being able to look forwards to a life full of choices. It is with this in mind that we want to do something for Ciara that will improve her quality of life in the here and now. Ciara's older brother, Michael, and younger sister, Sofia, both love being out and about on their bikes, with Michael often saying that he loves the fact that we are 'cycling family'. Unfortunately, due to Rett Syndrome, this isn't really the case as Ciara is always left behind at home with her Mum looking after her. Gayle and I would really love for all five of us to be able to go out riding our bikes together as a family and for Ciara to feel fully included. For this to happen, Ciara would have to have a specialist wheelchair bike. The Van Raam Veloplus would fit the bill perfectly.

Rett Syndrome (named after an Austrian Doctor, Andreas Rett) is a Neurological developmental disorder that is almost exclusively found in seemingly healthy girls. It is caused by a totally random genetic mutation at the point of conception. It is not hereditary and therefore can potentially affect any girl. As you are reading this there will be newborn baby girls in this country who have Rett syndrome, yet their extremely happy and proud parents will as yet, have no idea of what lies ahead. With Rett Syndrome, developmental delay is common and girls will often go through a period of regression, where they lose skills that they had developed, such as crawling, walking, talking, feeding and use of their hands. Breathing difficulties, digestive problems, disrupted sleep patterns, seizures, impaired cardiovascular function and sudden unexplained death are also associated with Rett Syndrome. It is often described as having the symptoms of Cerebral Palsy, Epilepsy, Parkinsons and anxiety disorders all in one little girl.