Par­ents want to com­plete new home for daugh­ters with rare ill­ness

The Sligo Champion - - FRONT PAGE - By PAUL DEER­ING

THE par­ents of two daugh­ters who have a rare ge­netic con­di­tion are in a race against time to com­plete a home for them so they can lead in­de­pen­dent lives.

Mairead and Aoib­heann Mitchell from Knocknarea were ea­gerly look­ing for­ward to mov­ing into a new home be­side the fam­ily house at Knocknarea but the pro­ject is cost­ing in the re­gion of €300,000 and it must be com­pleted by Jan­uary next in or­der to avail of a County Coun­cil grant of €29,000.

Fam­ily and friends have ral­lied around par­ents, Hi­lary and Kath­leen Mitchell in an ef­fort to raise the money and they have now ap­pealed to the pub­lic for sup­port.

Mairead (25) and Aoib­heann (26) (pic­tured right) have a con­di­tion called hered­i­tary spas­tic para­ple­gia and there is no cure.

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


Also through Mitchell­sis­tersin­de­pen­dentliv- ing Go Fund Me page on Face­book or Google Mitchell Sis­ters in­de­pen­dent Liv­ing.

Queries re­gard­ing fundrais­ing events can be di­rected to Ann 0861540308


The Mitchell fam­ily, mum and dad, Kath­leen and Hi­lary with daugh­ters, Mairead and Aoib­heann at their home near Knocknarea, Cool­era.

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