LIONS CLUB IS CAM­PAIGN­ING TO GET A CAR FOR EN­NISKERRY’S NEASSA

BE­CAUSE OF HER ILL­NESS, IT IS A MAM­MOTH 11-AND-AHALF-MINUTE STRUG­GLE FOR NEASSA SU­GRUE TO EN­TER HER CAR. SHE UN­DER­TAKES THIS PAINFUL AND TIR­ING TASK SIX TO EIGHT TIMES PER DAY. MARY FOG­A­RTY RE­PORTS

Bray People - - FRONT PAGE -

NEASSA JOHN­STON Su­grue is like any other mother of two, driv­ing them to all of their ac­tiv­i­ties, to school, to the doc­tor, and to do the shop­ping.

How­ever un­like other par­ents, it takes over eleven min­utes for her to pre­pare for any of the nu­mer­ous daily jour­neys she must take.

The En­niskerry woman has had arthri­tis since she was four years old and for the past num­ber of years has been in her wheel­chair full-time. She is cam­paign­ing for funds to pro­vide her and her fam­ily with an ap­pro­pri­ate car for their needs, in­clud­ing a lift that can get her chair di­rectly to the driv­ing seat.

‘I need to main­tain the mo­bil­ity that I have to look af­ter my kids. With­out get­ting this car, that’st’s not go­ing to hap­pen.n. If I keep hav­ing to putut the chair in and out,ut, close the boot and try to get to the driver’s seat,at, I know with the wayay my body works I’m go­ing to lose all my joints.’

Af­ter 37 op­er­a­tions to date, ev­ery one of Neassa’s joints have been re­placed ex­cept her toes.

‘ They’re not go­ing to last. They are all go­ing to loosen or break with what I’m do­ing. This is not a want, it’s a ne­ces­sity for me and my fam­ily, for my chil­dren to have as nor-nor­mal a life as pos­si­ble.’.’

Bray Lions Clubb is spear­head­ing the driverive to pro­vide a ve­hi­cle for the fam­ily.

‘We were so moved by her need, by her the per­son, that we just had to act,’ said club pres­i­dent Jerry Tee­han.

Neassa and her hus­band Henry have lived in En­niskerry for the past 14 years. They have two chil­dren - Bláithín (11) and Adó­nai (5), both of whom go to Scoil Chualann in Bray.

They fought for many years to get their beau­ti­ful chil­dren, Bláithín from Viet­nam and Adó­nai from Ethiopia, and Neassa’s first pri­or­ity, 100 per cent of the time, is their well­be­ing, hap­pi­ness, and fu­ture.

‘What I need is a car that has a lift. You drive on to the lift, it brings you up and you drive in to steer from your chair. I also need seats in the car. What has been rec­om­mended is a Volk­swa­gen Trans­porter or some­thing like that.’

At the mo­ment she has to take her chair apart, tak­ing off the lights, the arm and the neck, and plac­ing them on the ground. She must take the hoist out, at­tach four strings and straps with hooks on to the chair, hoist it in, then put all the bits back in to the car. ‘Ac­tu­ally I do find them all very heavy.’

TheThen the process must be dodone in re­verse when tak­ing the chair out.

‘It’s not just the time, it’s wewear­ing on my joints. I had a sec­ond el­bow put in last Novem­ber and they don’t know how long it’s go­ing to last. I shouldn’t be do­ing any of that,’ said Neassa.

She uses a string wrapped around her hand to pull the boot closed, and on one oc­ca­sion last year she suf­fered a head in­jury. ‘I couldn’t move out of the way quick enough as I was pulling it down.’

Get­ting around from the back of the car to the driver’s seat is also po­ten­tially dan­ger­ous.ous. ‘I have the splint let to puput on to al­low me to put tthe chair in and to get around to the side of the car. My bal­ance is very bad and I do lose my bal­ance try­ing to do this and us­ing a crutch. It’s quite dif­fi­cult and it’s fright­en­ing for the chil­dren as they’re afraid I’m go­ing to fall.’

If she breaks a bone, it won’t heal well be­cause she has been on steroids since her arthri­tis was di­ag­nosed at the age of 12.

She tol­er­ates con­stant pain. ‘ There’s al­ways pain,’ she said. ‘But you’re used to it. Then there’s “flare-up” pain which is dif­fer­ent again.’

Grow­ing up she re­calls be­ing paral­ysed with pain at times. ‘You had to be fed and dressed.’

Her par­ents could do lit­tle to ease that dis­com­fort. ‘I reckon it must have been hard for my mother. As a par­ent now, I ac­tu­ally re­ally feel for my own par­ents. I have to say they were bril­liant. While pro­tect­ing me, they didn’t make it ob­vi­ous. I was one of seven chil­dren and they were all bril­liant.’

She did ev­ery­thing that ev­ery­one else was do­ing, while spend­ing pe­ri­ods of time in or out of her wheel­chair. ‘You could be in it a few months, or it could have been a year.

‘I’m just over three years full time in the wheel­chair now and I’ve been told I’ll never walk again.’

How­ever none of this has re­motely damp­ened Neassa’s spir­its or dis­cour­aged her from get­ting on with her life.

THE SUM­MER HOL­I­DAYS are fast ap­proach­ing, and as well as all of the usual er­rands that must be done, Neassa wants to get out and about with them as much as pos­si­ble. But it all takes plan­ning.

‘I’ll be think­ing through what needs to be done, so you don’t need to be putting the chair in and out.’ You can’t just run out for a pint of milk. ‘Some­times you have to put things on the long fin­ger.

‘You learn an aw­ful lot of pa­tience when you’re in a wheel­chair,’ said Neassa. ‘At times when I can’t do things I’d have to wait for peo­ple. Or you go in some­where and things have to be moved. You can’t get in some­where be­cause of a step. Also you go in places and they might have high stools so your friends or fam­ily are sit­ting at a higher level. Peo­ple can walk into you, and you’re say­ing sorry be­cause the chair is big­ger, but they’ve ac­tu­ally walked into me.’

She is pa­tient though, and de­voted to her fam­ily. If any­one can help, go to www.ifundraise.ie/neassa, or by bank trans­fer to AIB ac­count num­ber 30914352, sort code 933 34 81.

Cheque do­na­tions can be posted to Bray Lions Club, c/o 1 Ross­lyn Court, Kil­lar­ney Road, Bray.

THIS IS NOT A WANT, IT’S A NE­CES­SITY FOR MY CHIL­DREN TO HAVE AS NOR­MAL A LIFE AS POS­SI­BLE

Neassa Su­grue with her chil­dren Bláithín and Adó­nai

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