Amy Kitson, of Carlton, Barnsley, has raised nearly £7,000 for Rett UK, as her daughter, Emily, was diagnosed with the syndrome at the age of three.
Her dedication has earned her a Proud of Barnsley nomination.
Emily, now seven, requires 24-hour-care and Rett UK aims to support families that have members living with the syndrome.
Rett Syndrome (RTT) is a genetic brain disorder that is severe and lifelong, resulting in mental and physical disability. It becomes apparent between the ages of six to 18 months of age in females, but it is very rare in males.
Symptoms include problems with language, co-ordination and repetitive movements.
Amy said she wanted to fundraise for the charity so they can help other families and because she is ‘very grateful to them for their guidance’.
Speaking about her daughter and her struggle with RTT, Amy said: “She has the smile of an angel and we strive to make her life as full and enriched as possible. There may be some very tough times ahead - she could lose the ability to walk and develop seizures amongst other complications associated with the disease.”
At the moment, Emily is communicating by using eye gaze technology. The machine she uses means she can focus her gaze on a specific item or symbol and it reads it back.
“We are working on her communication so she can let people know what she wants,” added Amy. “Rett UK have done a whole campaign on communication and we have been on a communication day with them to learn more about it all. We have got a lot of support. Emily is really happy with her machine.”
Amy, 39, and her family have done a lot of fundraising for Rett UK in the last 18 months, including her and husband Brian taking on the London Marathon.
“It was amazing. It was obviously quite a challenge but on the day it was great and we really enjoyed it,” said Amy. “It was so great to be a part of it.”
Amy is a fitness instructor at Royston Leisure Centre, which is operated by Barnsley Premier Leisure.
Kevan Riggett-Barrett, facility manager at Royston Leisure Centre, said he is impressed by Amy’s dedication to raising awareness of Rett Syndrome.
“She is a passionate and vibrant part of our team who is enthusiastic about raising funds for charities,” he said.
“As part of BPL’s commitment to our strategic priorities, we are happy to support Amy to raise as much as possible for Rett UK.
“We would encourage all our customers, members and guests to help support Amy with her events.”
Amy was raising funds through a JustGiving page, but this has now closed. Donations can be directly made to Rett UK in Amy’s name.