STICKING TOGETHER The Mitchell sisters, Mairéad and Aoibheann, are pictured with their parents Hilary and Kathleen.
The Mitchell sisters' mother, Kathleen McDonnell, is from Liscarney and they are regular visitors to Westport
AS a Westport hotelier helps a dedicated committee to organise a benefit night as part of the funding drive for two young women, Mairéad and Aoibheann Mitchell, who are living with the debilitating Hereditary Spastic Paraplegia (HSP), they tell their stories to The Mayo News.
“I thought something was going on with my walk when I was in my late teens. I walked very slowly and sometimes my friends and family and neighbours would have to wait for me to catch up. I began dragging one of my legs. Sometimes I would fall and would not be able to get back up. After one of these falls my parents took me for some neurological tests. Medical investigations diagnosed Hereditary Spastic Paraplegia. When the doctor told me I had hereditary spastic paraplegia, I had to ask him what it was. I had never heard of it and I asked the doctor to draw me a picture so I could understand it a bit better as I couldn’t understand the gene format. I was scared, I broke down in tears. I still do not know personally of anyone with a diagnosis of HSP.
Since my diagnosis, I have only heard of two people in Ireland with the condition.
If a person breaks their leg playing football for example, they can get it fixed. The worst aspect for a person with HSP is there is no cure.
HSP has changed my life because my walk is getting worse. Before my diagnosis my life was normal and care free.
Now I use a cane and I need my wheelchair more regularly to prevent falls and injuries.”
“I don’t think myself or Mairéad could go back to full-time study but there are a few opportunities out there when we are ready to start. Both of us are thrilled with the prospect of having our own place. A place where we will feel safe, a place where there will be no stairs to negotiate, a place where we can cook a meal and do a little more for ourselves, and most especially a place we can call our own. The building will be made accessible for wheelchairs and everything that myself and Mairead will need for the future. I don’t know if we will achieve total independent living but I hope that with the help of our parents we will do our best. This building will give us the opportunity to try and live to our best potential.”
The parents’ story
Hilary and Kathleen Mitchell have been married for 35 years and have five adult children. Kathleen hails from the well-known McDonnell family from Carramore, Liscarney and is daughter of the late Mick and Margaret McDonnell and works as a midwife in Sligo University Hospital, while Hilary is full-time carer for his daughters Aoibheann and Mairéad. The Mitchells live in Hilary’s family home in Knocknarea, Co Sligo.
They would describe themselves as an ordinary hardworking family: a couple who have had the same ups and downs as most other people. Their hopes and dreams were to raise good, well-educated, independent, and articulate young people able to take their place in the world. Their three eldest children progressed their education to university level and are now working in their chosen fields. Their two younger girls Aoibheann and Mairéad progressed normally through secondary school.
Kathleen says: “The aspirations we had for Mairéad and Aoibheann were the same as we had for our three other children, that they would go to college, make friends, get a job, have a family and have a place of their own when they were older.”
However, in their late teens Aoibheann and Mairéad slowly developed difficulty with their gait and walking. Hilary and Kathleen sought medical opinions and a diagnosis was not forthcoming. Kathleen describes this as possibly one of the most harrowing times of their lives. Throughout this time and most especially after the diagnosis of HSP the family were numbed, overwhelmed and in shock.
“I cried for weeks, we were both distraught. For a long time I was trying to deny it to myself. You know how it is … you would rather have the illness yourself than see something happen to your children. It’s a parent’s natural instinct,” she said.
Continuing, she added: “As parents, I suppose we always worry about what will happen when we are not there ourselves. We both have had illness in the recent years. This has given us a different perspective. The girls are at a critical stage now. Our family home is no longer suitable or indeed safe for their needs. We have had to make choices. We could do serious structural adaptations to our own house or we could build two purpose built units. We choose the latter as not only is it the best possible physical environment for the girls but it also fulfills their needs and aspirations to live independently and have their own place. As Mairéad has already said, it is difficult to know if the girls will achieve full independent living but for now we will continue to provide the supported living that they need.”
Speaking of the pressures, Hilary says: “Retirement has now taken on a whole different perspective. Nowhere had we made provision for this set of circumstances. We had never heard of HSP. Trying to meet the complex needs of their disability has of course put the family under stress: emotional, physical and financial.
“We have not found it easy agreeing to this funding venture. At the beginning we were totally against the idea. We are not a poor family and it just did not feel right. In truth, our family and friends in Westport felt compelled to take some positive action. The committee approached us and sought our permission to help fund the build. Given the huge sums involved, our age profile and the January deadline for the grant we were persuaded to say a big ‘Thank You’. This is most humbling and we are truly astounded by people’s good-will and generosity.”
THE dwellings are two separate units with a shared entrance. They are designed to provide a home where Mairéad and Aoibheann can live now and in the future. They are ground-floor living spaces with open-plan kitchen and living room. The bedroom has an en suite wet-room designed and built in accordance with Wheelchair Association’s Best Practice Access Guidelines. This necessitates doorways, corridors and rooms with larger dimensions than traditional residential construction. The units will be fitted with non-slip floor finishes, handrails, hoists and other specialized and non-standard equipment. There is an additional bed-space for guest/carer at first floor level.
It is envisaged that the final cost will be circa €300,000.Thankfully Sligo County Council are grant aiding the project with €29,000.To secure this €29,000 grant all building work needs to be completed by January 2018.With only four months to go to secure this funding, their extended family and friends are acutely aware of their plight and have decided to open a GoFundMe account.
These dwellings will allow Mairéad and Aoibheann to live in two separate disabled friendly apartments next door to their parents.
Hereditary spastic paraplegia
HEREDITARY spastic paraplegia (HSP) refers to a group of clinically and genetically diverse inherited disorders that are characterised by progressive weakness and spasticity (stiffness) of the legs.
ANNE Corcoran became involved in this campaign through close family contact with Kathleen’s family in Westport.
“We have been friends with Kathleen and all of her family here in Westport all of our lives. We are used to seeing Aoibheann and Mairéad coming to Westport. The plight of this family really touched me. It’s a tough one for any family to have to deal with. Out of our concern a few of us decided to set up a ‘GoFundMe’ page to start the fundraising off. We will also be organising events to accelerate the fundraising. I am personally delighted to be associated with the fund.”
A Benefit Night in The Castlecourt Hotel on Sunday, October 29, is one of many fundraising events planned. The committee welcomes all forms of fundraising: cake sales, charity walks and coffee mornings from concerned groups. Contact Anne, 086 3895771; Mary, 087 2788728; Caitriona, 086 8643227 or Geraldine on 087 2304458, with ideas or information.
Donations to the Mitchell Sisters’ Independent living can be made directly at AIB Westport
Mitchellsistersindependentliving Go Fund Me page on Facebook and www.gofundme.com/mitchellsisters.