Three years on from her diagnosis, a young Cork woman with an extremely rare disease with no known cure is fighting to find one.
Eimear McAndrew, from Fountainstown, is slowly losing motor function as she battles an uncommon degenerative neurological disease. At just 27 years old, the young woman’s vision has been very affected, and she is relying heavily on the support of her family and long-term boyfriend.
Eimear is fighting for a cure and has launched a campaign to support international research into Spinocerebellar Ataxia 7 (SCA7). The rare disease causes gradual deterioration of the cerebellum and spinal cord and can affect motor functions, including balance and eyesight.
Eimear in her element – playing camogie when she was younger
Eimear told CorkBeo that there is so little knowledge on the disease that she could “wake up tomorrow and need a wheelchair, or I could be totally blind, nobody knows for sure.”
Her health has deteriorated rapidly, and the young woman can no longer drive or read a simple dinner menu. Eimear, who is living in London with her boyfriend, said growing up in sport has made her strong, independent and resilient as she faces a new battle.
Eimear said: “It didn’t properly hit me until I was watching a match on TV and saw some girls that I used to play with. Seeing them out on the pitch brought me to tears because it’s something I’ll never do again.”
Before she got sick, Eimear’s life was defined by her love of sport. She played camogie for Douglas and football for Cork, bringing home several All-Ireland medals. But her life and plans for the future were totally derailed when she was diagnosed with SCA7 at just 24 years old.
Eimear with her brother
The condition affects multiple bodily functions, including motor functions, vision, speech, and even swallowing. It affects 1 in 100,000 people globally, and there is no known cure. She went to the doctor after feeling something was wrong during a camogie game.
Having played all her life, she had all the experience, speed, and coordination for the sport. But when she started losing her balance, Eimear knew something was wrong. After several hospital visits and regular eye tests revealed nothing out of the ordinary, Eimear continued to live her life as normal. It wasn’t until she moved to London after finishing her finance degree at UCC that something came up.
While working as an actuary, Eimear’s colleagues grew increasingly worried about her deteriorating sight, and the co-worker who sat beside her said, “Enough is enough, I’m booking you for an eye test.”
Eimear McAndrew
When one doctor told her it might be something genetic, further testing revealed that she is living with early-onset Spinocerebellar Ataxia 7. They discovered her dad was also living with it. But while her dad’s illness showed up later in life and can sometimes make him clumsy, Eimear’s disease is slowly killing her.
Eimear and her mum, Kim, have set up a GoFundMe campaign to support research into the illness. Work has started at Leiden University, the Netherlands, in collaboration with Cure Rare Diseases, but further research urgently needs funding. The campaign has already raised over €50k.
Eimear is “staying hopeful” and is so grateful to the support of her family, her work, and her boyfriend, Thomas. With the funds already raised, she said she was “shocked by the number of people who have donated to the campaign and have reached out privately. It’s so uplifting to know there are so many people behind me.”
Douglas School fundraiser
Her old primary school, Gaelscoil na Dúglaise, are also planning a fundraising walk later this year to support the campaign and raise money for Eimear. In a post to Facebook, sharing details of the walk, they said: “Eimear has always been a hero here at Gaelscoil na Dúglaise. She is the only girl in the school’s history to have played on the boys’ hurling and football panels for the ‘Sciath na Scoil’.”
All donations will go towards SCA7 research and the development of treatments. If you want to donate or support the campaign, you can do so here.