New Year’s Eve Ball for Mitchell sis­ters:


The Sligo Champion - - FRONT PAGE - By JENNY MCCUDDEN

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.

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