Supporting Penny-Mae

Penny-Mae is 11 and has ataxia, as well as other complex needs, presenting challenges to her Mum, Emma, in all aspects of her life. She has low muscle tone throughout her body, with her legs being particularly affected, so she crawls to get around indoors and wears splints to support her ankles.

With only around 500 children in the UK having been diagnosed with a progressive ataxia, diagnosis can prove to be a lengthy process, with it often being mistaken for other conditions. Emma first had concerns when Penny-Mae missed development milestones from six months old, but ataxia wasn’t confirmed until she was three.

Emma explains: “Penny has good days and bad days; cold weather affects her greatly, but frustration also results in meltdowns. We have many tactics to deal with these situations at school and at home – Penny-Mae’s older siblings are extremely supportive and understanding of her needs, which helps me a lot.”

Ataxia UK supports children like Penny-Mae and their families through their helpline and with practical support such as providing a patient information pack for patients to pass on to their GPs and other healthcare professionals, to help them better care for people with ataxia.

Many parents of children with ataxia say it really helps them to meet other people with the condition and their families, to realise they’re not alone. Ataxia UK’s support groups and local branches run events, trips, fun activities, and offer social gatherings and opportunities for members to connect.

The Ataxia UK paediatric centre at the Sheffield Ataxia Centre, offers the best possible outpatient care to children and their families, including treatment and a full range of diagnostic facilities, including advanced neuro-imaging and genetic testing.

With over £6.75 million invested in research since 2000, Ataxia UK continues to work for effective treatments and a cure for people like Penny-Mae. By supporting Childlife you are helping them to improve the lives of children with ataxia and their families, now and in the years to come.