A gift to Childlife is very special as funds are divided between its four partner charities, each one helping children and young people with major challenges to their daily lives. One of the Childlife charities is Ataxia UK, a charity which supports those suffering with ataxia, a rare and progressively debilitating neurological disorder.
Hearing an interview on a local radio station lead to Lauren’s family getting in touch with Ataxia UK and opening up a new network of support for the family.
This lovely photo of five-year-old Lauren Hawryluk, happily posing at school with her brother and sister, hides the fact that she and her family are living with cerebellar ataxia, an inherited form of ataxia which is unpredictable and progressive.
Warning signals were apparent to Lauren’s dad Oliver and his wife Jennifer when Lauren’s speech development was delayed and she only began to walk at 18 months. Jennifer, who also has ataxia, knew that Lauren could have inherited the disorder, which characteristically causes unsteadiness and a lack of co-ordination. Tests confirmed that this was the case.
A breakthrough came for the family when in February last year they were listening to their local radio station and heard Nottingham mum Kelly Chapman, who also has a daughter with ataxia, talking about a fundraising climb of Mount Kilimanjaro. Oliver was able to get in touch with Kelly and through her joined the Nottingham Ataxia UK support group. Last year the family attended their first Ataxia UK conference which Oliver says gave Lauren a real boost.
“Lauren made some great new friends at the conference, other children who could understand how she feels and the challenges she faces.”
Trips to hospital for appointments for Lauren involve a 50-mile round trip for the family, which can be stressful and the family know that one day Lauren may need to rely on a wheelchair to get around.
“We really do have to take every day as it comes”, says Oliver, “but we know that someone is at the end of the phone if we need them. The Ataxia UK Helpline has been invaluable to us for advice on helping Lauren with things like occupational therapy and assistance at school”.
Your regular donations are helping families like the Hawryluk’s to stay informed about advances in treatment for and research into ataxia. It also gives them the opportunity to keep in touch with other families so they can support each other – thank you.