Pals Neil Fowler and Steve Downey will cycle 1,300 miles from Ellesmere Port to Venice to raise funds for a charity working on the treatment and eventual cure for a heartbreaking disease that has robbed Neil’s daughter Ciara of a carefree childhood.
Neil, 42, from Ellesmere Port, will take part in the Port2Port – a Race Against Time cycling challenge, beginning on Saturday June 20, along with his friend Steve, 29, from Chester, backed up by their support crew in the form of Steve’s dad Peter Downey from Hoole and Lawrence Holland from Blacon.
As part of Team Ciara, the pair aim to complete the ride, which involves four massive Alpine climbs and up to 200 miles per day, in just seven days with a target of generating £20,000 for charity Reverse Rett and raising awareness of Rett Syndrome.
Neil’s five-year-old daughter Ciara has Rett Syndrome, a neurological developmental disorder which is almost exclusively found in seemingly healthy girls caused by a totally random genetic mutation at the point of conception. It is not hereditary and therefore can potentially affect any girl, with the symptoms emerging just months after a normal birth and normal development until that point.
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, 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, Parkinson’s Disease and anxiety disorders all in one little girl.
"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," said Neil, a physiotherapist at the Countess of Chester Hospital, who is married to Gayle with two other children, Michael, eight and Sofia, two.
This is the third year of cycle challenges for Neil and Team Ciara who have raised more than £55,000 for Reverse Rett. In 2013 there was ‘Home to Rome’ and the following year came 14-14-14 which involved passing through 14 countries in 14 days in 2014.
Neil, who is currently training hard, added: "The Race Against Time has a dual meaning. First, it reflects the challenges that girls with Rett Syndrome, their families and the researchers face every single day. Without an effective treatment and eventually a cure girls will continue to suffer and die. Second, it reflects the very nature of our challenge. Please support our cycling challenge and donate whatever you can."
Thanks go to sponsors including Vauxhall Motors who have loaned a brand new Vivaro van for the support role, Castelli Cafe for supplying cycle clothing, High 5 for the supply of nutritional food and drinks, Digital Exposure for photographic services, Autonet for vehicle insurance and Enzo’s Restaurant at Nantwich for high energy flap jacks.
To learn more about the Port2Port challenge, Rett Syndrome, the work of Reverse Rett and to make a donation, visit: www.justgiving.com/TeamCiaraPort2Port/