New Year’s Eve Ball for Mitchell sisters:
THE MITCHELL SISTERS ARE FUNDRAISING FOR TWO NEW HOUSING UNITS
THIS is a story about disability, of one family’s struggle to adapt to life after a devastating diagnosis, but it is also a story about community and how when people come together to help one another, anything is possible.
Mairead (26) and Aoibheann Mitchell (25) from Knocknarea were just teenagers when doctors discovered they both had a rare genetic condition. Hereditary Spastic Paraplegia (HSP) had already made its mark before it was eventually diagnosed.
The sisters experienced some difficulties at school and were assessed for Dyslexia. Their walk and gait was affected leading doctors to test for Multiple Sclerosis.
Mairead who was a childcare student in IT Sligo recalls the day she knew something was seriously wrong: “I was walking into the college with my bag on my back and I fell at the entrance to the building and no matter how hard I tried, I just could not get back up. It took two people to carry me inside to the nurse.”
There followed more than two years of investigations and medical tests until in 2011 Mairead was diagnosed with HSP. There was no relief. To know was to be afraid.
Mum Kathleen says that at the same time the family started ‘ to have doubts about Aoibheann’ who was displaying similar symptoms to Mariead.
“We knew she was slow in walking. There was a jerk at the back of her knee. I remember thinking I cannot cope with two,” says Kathleen. But a few months later in June 2012 confirmation came that Aoibheann had the same hereditary condition.
“We were speechless,” recalls Kathleen, “It was the worst time of our lives. We did an awful lot of crying. I wished I was the one diagnosed. I didn’t want anything to be wrong with the girls, especially as they were approaching their twenties, what should have been an exciting time in their lives.”
Even last week, sitting around the kitchen table at their welcoming home in Knocknarea the Mitchells cannot remem- ber that turbulent time without crying. The hardest thing to accept was the inescapable fact that there is no cure for HSP.
“When you are told that, you don’t handle it, you can’t,” says Mairead, “You just burst into tears and question why.”
This devastating disease is rare affecting approximately 3 persons per 100,000 population. The sisters have a clinically distinct form that includes cognitive impairment and severe lower limb weakness and spasticity.
“It is almost like grief,” explains Kathleen, “You go through a range of emotions. I had to try to be strong for the girls.”
Acceptance was key to moving forward but like grief, that could only come with time. Now the girls are looking towards a
a new chapter in their lives as they prepare to fly the nest to live independently for the first time.
And that’s where the community coming together in a united show of support comes into this story. Because without that help there would be no new homes for the girls.
Two new specially adapted units are being built next to the family home nestled in the foothills of Knocknarea with breathtaking views of Ballisodare Bay.
The project is costing €300,000 but to avail of a council grant worth €29,000 the building has to be completed by January next year. The family who ploughed their life savings into the venture were running out of time and more crucially money. So a public appeal to raise €165,000 was launched. The Sligo Champion got behind the campaign and things ‘spiralled from there.’
Already a staggering €120,000 has been raised. “It is amazing,” says Aoibheann, “I never knew people could be so generous. I’m so shocked. I’m very happy about it. I was the one who suggested to Dad that we build.”
Likewise Kathleen who works as a midwife in Sligo University Hospital is overwhelmed by the spirit of generosity: “We always knew we lived in a good community but this has made us understand it. I’m shocked. I didn’t expect anything like this, to see that people care. We could never in our wildest dreams have imagined this response. ”
The Mitchells admit they were reluctant to ask for help.
“It was the most difficult thing we had ever done,” explains Kathleen, “But now we feel there is healing in it for all of us. The girls have been interviewed in the media, meeting so many people and talking about their illness. It has been a positive new experience for them. There’s been so much goodwill and kindness and positivity towards us. Thank you so much to everyone who has helped us.”
Both Aoibheann and Mairead are also eternally grateful to the public for getting behind the campaign and are delighted with the progress of their new homes which are now thankfully on target to be completed by the January deadline.
And what are they most looking forward to?
A little bit of space, just for themselves. Aoibheann jokes: “I won’t have to listen to Mairead giving out to me all the time anymore!”
Mairead is looking forward to entertaining friends and family. “It will be my party house!” she says.
But for both girls this is not just a new beginning, it’s a necessary step to a better way of life.
“Negotiating the stairs here is the hardest thing for us,” says Mairead, “This house is not wheelchair friendly or suitable for us. HSP is a progressive degenerative disease. At least now living at home will get easier. And Mum and Dad are just beside us. We always wanted to have our family close.”
As the big move gets closer, the Mitchell sisters are already planning their house warming - and everyone is invited!
Aoibheann and Mairead Mitchell outside what will be their new home in Knocknarea
Kathleen and Hillary Mitchell with their daughters, Aoibheann and Mairead. Below: The new homes.