Sue Chapman
Lily's Summer Sports Barbeque
Fundraising for Reverse Rett
Story
I am raising money for Reverse Rett, who continue to help families affected by the life restricting Rett Syndrome. Rett Syndrome is a neurological or brain disorder which affects apparently healthy little girls around the age of 6-18 months. The condition usually follows a path of progression where skills, such as speech, hand use, and mobility, are lost. Most girls do not speak at all. Some have a few words. Some are left with some hand use. Some girls never walk, some girls learn to walk and lose it later, and a few keep walking.
Until her first birthday, Lily was like any other little girl - happy, loving and desperate to explore the world around her. Then things started to change. She lost her speech, the use of her hands and her interest in life. Lily was in pain physically and emotionally and no one could give any answers. Lily faces the prospect of epilepsy, severe spinal curvature, life threatening breathing problems, feeding difficulties and attacks of acute anxiety.
Lily is 3 now, and still a happy, gorgeous little girl with a hugely supportive network of family and friends, some of whom are the strongest and most inspirational people I have ever met. With their fundraising through 'Team Lilypad' and positive drive to help make Lily as happy as she can be, Lily now has an eye gaze system to help her communicate and a lovely new specialist chair so she can now relax comfortably with her family.
Having a little girl of my own, meeting Lily last year really affected me. Her and her family's journey is a heart breaking and uncertain one, but there is hope. Rett Syndrome has been reversed under laboratory conditions so please give generously to help Reverse Rett carry on their amazing work and continue to help Lily and her family.
Thank you for taking the time to visit my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Until her first birthday, Lily was like any other little girl - happy, loving and desperate to explore the world around her. Then things started to change. She lost her speech, the use of her hands and her interest in life. Lily was in pain physically and emotionally and no one could give any answers. Lily faces the prospect of epilepsy, severe spinal curvature, life threatening breathing problems, feeding difficulties and attacks of acute anxiety.
Lily is 3 now, and still a happy, gorgeous little girl with a hugely supportive network of family and friends, some of whom are the strongest and most inspirational people I have ever met. With their fundraising through 'Team Lilypad' and positive drive to help make Lily as happy as she can be, Lily now has an eye gaze system to help her communicate and a lovely new specialist chair so she can now relax comfortably with her family.
Having a little girl of my own, meeting Lily last year really affected me. Her and her family's journey is a heart breaking and uncertain one, but there is hope. Rett Syndrome has been reversed under laboratory conditions so please give generously to help Reverse Rett carry on their amazing work and continue to help Lily and her family.
Thank you for taking the time to visit my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.