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So my friend Neil Fowler and his family have taken part in some unbelievably tough challenges over the years in order to raise much-needed funds to help his daughter Ciara and speed up the finding of a cure for Rett Syndrome (in 2013 cycling 1400 miles from Chester to Rome, in 2014 cycling through 14 countries in 14 days and just last year cycled from Ellesmere Port to Venice in only 7 days).

This year I have decided I'm going to help in his quest and become one of Ciara's Centurions, where Neil is aiming for 100 people to raise £100 each for the charities Reverse Rett & Claire House Children's Hospice.

At 08.20 on Sunday 7th August I'll be starting the London Triathlon with a 1 mile swim, then onto my bike for 25 miles around the the capital before finishing with a 6 mile run! I've never completed an Olympic distance race before so this will be a challenge but one I'm looking forward to given I'm doing it for a great cause, a brilliant family and a wonderful little girl!

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Ciara's story: (As written by Neil Fowler)
In September 2009 my Daughter, Ciara, was born. When we left the hospital, my wife and I thought that together with our son, Michael, we had our perfect (and healthy) little family. For the first 6-7 months of her life everything appeared to be fine with her development. It was around this time that we started to notice that Ciara was not attaining her developmental milestones. In particular, she never started to crawl, she began to withdraw socially, she had no interest in toys, she could not use her hands, she would constantly grind her teeth, she would become anxious and distressed for no obvious reason, had difficulty eating food and exhibited extremely low muscle tone which caused her to be floppy, preventing her from being able to sit unaided. A subsequent referral to a Consultant Paediatrician triggered 18 months of clinical investigations at the Countess of Chester Hospital and Alder Hey Children’s Hospital, Liverpool. These investigations took the form of numerous blood tests, muscle biopsies along with Ultrasound, CT and MRI scans of her body and brain. All of these investigations failed to arrive at a diagnosis, though did eliminate a number of better known conditions and showed that structurally there was nothing wrong with her brain i.e. she was not brain damaged. The term ‘Global Developmental Delay’ was continually used by the professionals to describe Ciara’s situation. We were then referred to a Consultant Geneticist who was the first to raise the possibility of Ciara having Rett Syndrome. We had never heard of Rett Syndrome at this point and we were probably in denial and let ourselves believe that it was just another test to rule out another possible condition. How wrong we were. The day before Ciara’s 2 birthday (September 2011) we received the devastating news that the latest blood test confirmed that Ciara had Rett Syndrome.
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. From birth, girls will typically develop as normal for the first 6-18 months of their lives....their parents and families being completely unaware of there being anything wrong!
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. Other typical problems associated with Rett Syndrome include breathing difficulties, eating/digestive problems, musculoskeletal problems (including spinal curvature (Scoliosis) and joint dislocation), incontinence, disrupted sleep patterns, seizures, impaired cardiovascular function and sudden unexplained death. It is often described as having the symptoms of Autism, Cerebral Palsy, Epilepsy, Parkinsons Disease and Anxiety Disorders all in one little girl.
When reading any literature about Rett Syndrome, it will be stated that it’s incidence is 1 in every 10-12,000 girls will have Rett Syndrome. As such, it is often described as a rare condition. To help put this in to context, here are a few further facts about Rett Sydrome that will hopefully give some clarity:
    •    Each day 18-20 girls are born with Rett Syndrome
    •    Each year approximately 7000 girls are born with Rett Syndrome
    •    Since Ciara was born in September 2009 over 35,000 more girls have been born with Rett Syndrome
    •    Between Ciara’s 5Birthday in September 2014 and by the time we start the Port2Port Challenge, over 5000 more girls will have been born with Rett Syndrome
    •    Rett Syndrome is just as prevalent as conditions such as Cystic Fibrosis, which the majority of people have at least heard of

After reading the above facts, Rett Syndrome suddenly doesn’t seem quite so rare!
As you are reading this, those girls with Rett Syndrome born within the last 6-18 months will as yet, not be showing any signs of there being anything wrong. Sadly, the devastation and heartbreak that comes with a girls lack of further development, regression and subsequent diagnosis, lies in the coming months, for those parents who currently could not be happier.
As things stand there is no treatment or cure for Rett Syndrome. Life expectancy is significantly reduced and Ciara, along with all others girls, face the prospect of a life in a wheelchair and 24 hour 1:1 care. There is the likelihood that she will require tube feeding in the future and due to having low muscle tone will develop a spinal curvature (Scoliosis) which would have a detrimental effect on her ability to breath. Ciara already has a partially collapsed lung. What I still find astonishing, particularly in view of the severity of the condition is how relatively few people have heard of Rett Syndrome, even within the medical professions.
What can be worse for a parent than feeling unable to help their child when they are suffering. The courage and bravery that girls with Rett Syndrome demonstrate each and every day of their lives is truely amazing and inspirational. When Ciara was diagnosed I felt that our world had literally fallen apart. All our hopes and dreams for Ciara’s future seemed to vanish with those words, “I’m sorry to tell you that your daughter has Rett Syndrome”. The thought of never hearing her call me Daddy, never being able to tell us what she wants to eat, never being able to tell us what she wants for her Birthday or for Christmas, never being able to play with her siblings, never having other children knocking on our door for her to go out and play, never knowing what she’s thinking about, not being able to chase her own dreams and the prospect of me never being able to walk her down the aisle and dance with her at her wedding were all, and still are at times, too much to take.
Shortly after Ciara’s diagnosis and for my own sanity, I decided to try and raise awareness of Rett Syndrome and money to help fund research into finding a cure. It was when searching on the internet that I came across the charity, Reverse Rett.
When we were given the diagnosis, a Consultant Paediatric Neurologist said to us, “If your daughter has to have any neurological condition, then Rett Syndrome is the one to have. It is the one most likely that a cure will be found for”. At that point in time we didn’t really take on board what he said and I probably thought, “Yeah right, whatever”. It was when reading the information on the Reverse Rett website that I discovered what was going on in the world of research. In 1999 scientists had discovered that Rett Syndrome is a single gene disorder and they discovered exactly which gene was at fault (the MeCP2 gene). This gene has a crucial role in the control of overall brain function. The fact that it is a single gene disorder lends itself to the potential for discovering treatments and/or a cure. What really got my attention was that in 2007 scientists (Professor Adrian Bird and his team at Edinburgh University) carried out an experiment using a mouse model and discovered that by replacing the missing proteins on the faulty gene, all symptoms were reversed and Rett Syndrome appeared cured, albeit in a mouse. From this point, the potential for a cure for girls with Rett Syndrome became a very real prospect and this is what our Consultant had been referring to.
As promising as the research is, everything as usual comes down to money. The rate at which the research trials can move from animals to humans and then on to effective treatments and ultimately a cure, is directly related to the amount of available research funds. Reverse Rett donates all money raised to fund this vital research. It is for this reason that we wholeheartedly support this charity.
When Ciara was diagnosed, clinical trials in humans were on the horizon........these have now started! Professor Adrian Bird (as mentioned above) was last year nominated for the Nobel Prize for Science and received a Knighthood in the New Years Honours List, both in recognition of his achievements and the subsequent potential for curing Rett Syndrome. Hopefully, people can see that we are not naively hoping against hope for something that will never happen. The prospect of a cure is very tangible.........but for Ciara and all other girls suffering with Rett Syndrome, it is literally a race against time!
At this point in time Ciara is 6-years-old. She attends a school for children with disabilities and as far as we can tell, she seems to be enjoying it. However, we have recently been advised by the school that Ciara is considered to be one of the two most vulnerable children in the school......a scary thought considering the nature of the school that she is at. Ciara is still unable to sit unaided,