VIDEO: Sisters have lot to give despite condition

With their quick wits and mischievous smiles, Ann and Margaret Kennedy could be the life and soul of any party.

Sharp and clever, but with a playful and occasionally self-deprecating humour, you’d be forgiven for thinking the sisters don’t have a care in the world.

But beneath the surface, the pair deal with a huge amount of pain and uncertainty, brought on by a rare genetic condition which has yet to be fully diagnosed.

Doctors have described it a mixture of Parkinson’s disease, Muscular Dystrophy, Dystonia and Autonomic Disease, but they don’t yet have a name for the condition. It’s so rare, Ann and Margaret, twin sisters from Co Wicklow, could be the only two cases in the world.

“We can’t make energy so we get very tired very quickly,” said Margaret. “They know what’s going wrong, they can pinpoint that, but they don’t know why. It’s a mystery in terms of cause, but not in terms of how it’s played out. It’s very complicated for other people to understand because they want a name.”

While the pair can still walk, they use wheelchairs to get around. They have a number of other requirements, but are determined to pick and choose the services they need and don’t like being told what to do.

“We’ve had a bit of a traumatic time trying to get the services we need. There has been a lot of friction between service providers and us as service users and I think there’s been a loss of respect,” said Margaret.

“Providers have to realise that they are there to free us, not to bind us. And so the important message from Ann and I is we may be older, but we’ve still a lot to give, we still want to get on with having a decent life, and an independent life.” Margaret thinks people with disabilities should make their voices heard and wants to “re-energise” the disability movement, while Ann said it’s important to note people shouldn’t be defined by their disability. But, as a neurodegenerative progressive disease, Ann and Margaret’s condition will continue to get worse as time goes by.

“It started in our 50s and it’s been fairly slow up until now. We’re 62 but we’re hoping to get another 10 years out of life,” said Margaret.

“That would be a bonus,” agrees Ann

Margaret and Ann Kennedy from Wicklow with their lovely signs at A Declaration of Independence on Saturday pic.twitter.com/WXsQ33u0EN

— Ceallach Ní Bhriain (Kelly O'Brien) (@Kellingtondawg) June 14, 2015