The Tour de Mun­ster is back in aid of Down Syn­drome Ire­land

He­len Kelle­her meets one mum who will be sad­dling up in aid of Down Syn­drome Ire­land this week

Irish Examiner - - News -

SEVEN-year-old Caoimhe Hur­ley will wave her mum Ais­linn and her god­par­ents Eleanor and Kevin Fen­nessy off on Thurs­day, Au­gust 6, as they join some 120 oth­ers to par­tic­i­pate in the Tour de Mun­ster, a 600km, four­day cy­cle across the prov­ince in aid of the Mun­ster branch of Down Syn­drome Ire­land. It is the 20th an­nual Tour de Mun­ster, which raises vi­tal funds and aware­ness for Down Syn­drome Ire­land as well as in­di­vid­ual ben­e­fi­cia­ries.

Caoimhe is Ais­linn’s third child — Conor is 15 and Eimear is 13 — so it is a busy house­hold, but de­spite this, Ais­linn has man­aged to squeeze in lots of train­ing for this mam­moth char­ity cy­cle, which has raised over €3.1m for chil­dren’s char­i­ties since it started in 2001. It is her sec­ond year par­tic­i­pat­ing.

When Ais­linn found out that Caoimhe had Down syn­drome, she re­mem­bers go­ing into “a kind of over­drive”, af­ter the ini­tial shock, try­ing to get as much in­for­ma­tion as pos­si­ble.

She says Down Syn­drome Cork was a huge sup­port. “Just meet­ing other mums in the be­gin­ning and get­ting the right in­for­ma­tion and ac­cess­ing the ser­vices th­ese chil­dren need is so im­por­tant,” says Ais­linn.

Early in­ter­ven­tion is the key to giv­ing th­ese chil­dren the best chance of go­ing to main­stream school and ul­ti­mately be­com­ing in­de­pen­dent, she points out. “Thank­fully we were able to get Caoimhe the help she needed early on with Down Syn­drome Cork. Caoimhe at­tended speech and lan­guage ther­apy when she was just a few months old and physio classes with COPE when she was just two years old.

“We are very lucky that Caoimhe doesn’t have health is­sues so she has thrived as she has got­ten older. I feel if we had not had ac­cess to th­ese ser­vices early on she might not be where she is to­day. It has re­ally helped her in so many ways.

Ais­linn says funds are des­per­ately needed now to keep th­ese ser­vices go­ing.

As a re­sult of the Covid-19 pan­demic, the Mun­ster branches of Down Syn­drome Ire­land have seen the ma­jor­ity of their fund­ing events can­celled over the past num­ber of months. Branches have said they are fac­ing in­creased costs as they pre­pare to re­open their cen­tres to en­able some reg­u­lar one-to-one ser­vices, such as oc­cu­pa­tional and speech and lan­guage ther­a­pies, to take place.

Ais­linn says there is a huge fear among par­ents of chil­dren re­gress­ing. “I know there are par­ents in a lot worse sit­u­a­tions than ours and I want to speak for them too. For Down syn­drome chil­dren, in par­tic­u­lar, their whole life is their rou­tine so hav­ing that dis­rupted as a re­sult of Covid-19 has been very dif­fi­cult for us all”.

Caoimhe at­tends her lo­cal main­stream school, Water­grasshill Na­tional school. “She loves it there and hugely misses it at the mo­ment. Ev­ery ac­tiv­ity has ob­vi­ously stopped for her and she greatly misses her gym­nas­tics and her dance and sport, but most of all just meet­ing her peers. She has had ab­so­lutely no rou­tine and no ther­apy and no ac­tiv­i­ties since March (Caoimhe is a mem­ber of Spe­cial Olympics club Rebel Rock­ets, Water­grasshill Ath­let­ics Club, and Car­rigt­wohill gym­nas­tics).

“The only ex­po­sure she has had was July Pro­vi­sion in the last few weeks, whereby a teacher comes to our house to do a few hours work each week,” ex­plains Ais­linn.

If it was not for this, Ais­linn says she would have had se­ri­ous con­cerns about Caoimhe go­ing into first class in Septem­ber.

Since 2001 the Tour de Mun­ster char­ity cy­cle has raised over €3.1m for a wide range of chil­dren’s char­i­ties, in­clud­ing €2.6m for the Mun­ster branches of Down Syn­drome Ire­land since they be­came the main ben­e­fi­ciary of the Tour in 2010.

Tour founder Paul Sheri­dan said fundrais­ing for chil­dren in need is more im­por­tant now than it has ever been.

“Like many things we were un­sure if the Tour de Mun­ster could take place in a phys­i­cal for­mat this year but no mat­ter what, we were still go­ing to do our very best to raise as much funds as pos­si­ble for th­ese amaz­ing young chil­dren and adults with Down syn­drome. With re­stric­tions lifted, we are de­lighted to be able to hit the road again with in­creased safety mea­sures in place. It’s ev­i­dent how ex­tremely dif­fi­cult Covid-19 has been for those with Down syn­drome and the six branches of Down Syn­drome Ire­land across Mun­ster and we want to do as much as pos­si­ble to raise funds and aware­ness.”

This year’s Tour will start in Cork City. Cy­cling leg­end Seán Kelly will once again be tak­ing part (this will be his 14th time par­tic­i­pat­ing). The Tour will start from City Hall on Thurs­day morn­ing and make its way through Water­ford, Tip­per­ary, Lim­er­ick, Clare, and Kerry be­fore re­turn­ing to Cork on Sun­day, Au­gust 9. The or­gan­i­sa­tion re­ceives no state fund­ing — ev­ery­one who par­tic­i­pates in the Tour de Mun­ster has to pay their own way, as well as raise spon­sor­ship and pay for their own train­ing.

It was Caoimhe’s god­par­ents, Ellen and Kevin Fen­nessy, who first got in­volved in the Tour de Mun­ster in 2018, spurring Ais­linn to get in­volved last year. Ais­linn said the sup­port from her lo­cal com­mu­nity, friends, and fam­ily has been amaz­ing. She raised over €3,000 last year. She is a mem­ber of The Hill Cy­cling Club and runs with Water­grasshill Ath­letic Club, but said a lot of train­ing for the Tour was done on her own as the clubs are only now get­ting back to­gether.

“It has been a tough few weeks’ train­ing try­ing to get my fit­ness back up to get through the four days. I miss the struc­ture of the club and it was just harder be­cause we were train­ing on our own.”

It is Eleanor and Kevin Fen­nessy’s third time do­ing the Tour. “It is won­der­ful to be a part of it,” says Eleanor.

“Each year it is won­der­ful to wit­ness the re­cep­tion we all get from peo­ple in the dif­fer­ent towns. We greatly ad­mire the work tour or­gan­iser Paul Sheri­dan does and ob­vi­ously what Down Syn­drome Ire­land do. We have been friends with Ais­linn and Paul for many years and we see how dif­fi­cult it can be. I know they worry about the fu­ture and about ac­cess­ing ser­vices.”

Eleanor says it is so won­der­ful to see her god­daugh­ter Caoimhe do­ing so well and to see how she has ben­e­fited from the ser­vices to date.

Deirdre Saul, in­terim chief ex­ec­u­tive of Down Syn­drome Ire­land, says the fan­tas­tic sup­port from Tour de Mun­ster over the past 11 years has made life-chang­ing dif­fer­ences to those with Down syn­drome in Mun­ster.

“We are very grate­ful for ev­ery­one’s sup­port. The pan­demic has meant that chil­dren and adults with Down syn­drome have been un­able to at­tend reg­u­lar face-to-face ap­point­ments. Rep­e­ti­tion is key for those with Down syn­drome to en­able them to keep pro­gress­ing and im­prov­ing their daily lives, so it has been re­ally dif­fi­cult. Hav­ing been un­able to at­tend th­ese ser­vices as a re­sult of Covid-19 has been very dif­fi­cult both for chil­dren and adults with Down syn­drome, as well as their fam­i­lies.”

■ For more in­for­ma­tion and to do­nate please visit tour­de­mu­n­ or find it on Face­book.

‘Fundrais­ing for chil­dren in need is more im­por­tant now than it has ever been

Clock­wise from main: Eimear Hur­ley and Caoimhe Hur­ley with Maeve Gog­gin, Water­grasshill, at the end of the 2019 Tour de Mun­ster on Pa­trick’s Hill; the Hur­ley fam­ily at the 2019 Tour de Mun­ster cheque pre­sen­ta­tion; and Ais­linn Hur­ley on her sad­dle in Cork City dur­ing last year’s Tour.

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