independent

Tuesday 21 November 2017

A life changing condition

Paul Deering speaks with the Mitchell family who are attempting to raise enough money to allow their daughters to lead their own lives

For some time before 2011, Mairead Mitchell knew that something wasn't quite right. An unexplained fall as she left IT Sligo brought matters to a head.

Investigations were speeded up and a neurologist put a name on a condition which she naturally hadn't heard of before, hereditary spastic paraplegia.

About seven months later, Mairead's sister, Aoibheann received the same diagnosis.

"It is difficult but there's no point looking back, something could happen in every family. I'll look up and look out," is Mairead's rather philosophical view of an illness that makes walking a struggle.

Her mobility is restricted but Aoibheann can drive. And, it's more independence these two young women want in their lives.

They come from a family of five children with Aine, Angus and Sean all free of the conditions which has taken hold of their bodies.

Mum Kathleen, a midwife at Sligo University Hospital, is originally from Westport. She and husband, Hilary married in 1982 and have been living at Knocknarea ever since. Hilary has become his daughters' full time carer.

There's no cure for the sisters' condition. They attend a physiotherapist every week and are seen about twice a year by their neurologist.

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.

In Europe, the frequency of HSP is estimated to be 1-9 cases per 100,000 population. Because HSP is rare, it is often misdiagnosed, making the actual frequency difficult to determine. A reasonable estimate, however, is that it affects approximately 3 persons per 100,000 population.

In Aoibheann and Mairead's case, their condition is a clinically distinct form that includes cognitive impairment and severe lower limb weakness and spasticity.

Before her diagnosis, Mairead says her life was normal and care free.

"After secondary school at Mercy College I did a PLC in Childcare. After that I went to IT Sligo to study Early Childhood Care and Education.

"As a teenager I thought something was going on with my walk. 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. 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 and 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 HSP.

"If a person breaks their leg playing football for example, they can get it fixed. The worst aspect for a person with Hereditary Spastic Paraplegia, is that there is no cure.

"HSP has changed my life because my walk is getting worse. I use a cane and I need my wheelchair more regularly to prevent falls and injuries. As the disease progressed College became increasingly difficult and I had to give it up in my third year of study.

"I don't think myself or Aoibheann could go back to a full- time course, 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 home.

"The building will be made accessible for wheelchairs and everything that myself and Aoibheann 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 life to our best potential."

Hilary and Kathleen describe themselves as an ordinary hard working family. Their three eldest children progressed their education to university level and are now working in their chosen fields.

"The aspirations we had for Mairead 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," says Kathleen.

She noticed Aoibheann and Mairead slowly developing difficulty with their gait and walking. Throughout this time and most especially after a diagnosis of Hereditary Spastic Paraplegia 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," says Kathleen.

Hilary 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 fulfils their needs and aspirations to live independently and have their own place.

"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.

"Retirement has now taken on a whole different perspective. Nowhere had we made provision for this set of circumstances. 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."

Donations to the Mitchell Sisters Independent living can be made directly at AIB Westport

Account: Mitchellsistersind.living

IBAN IE68AIBk93716938430070

Bic: AIBKIE2D

Also through Mitchellsistersindependentliving Go Fund Me page on Facebook or Google Mitchell Sisters independent Living.

Queries regarding fundraising events can be directed to Ann 0861540308.

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