Help needed

Goal for Yar­mouth mother and daugh­ter GoFundMe is $60,000

Tri-County Vanguard - - FRONT PAGE - CARLA ALLEN

A Yar­mouth teenager and her mom in need of trans­porta­tion help.

Fif­teen- year- old Jalissa Ma­cLel­lan, who has Hurler syn­drome, must see doc­tors for con­di­tions af­fect­ing al­most ev­ery part of her body.

Most of those ap­point­ments are at the IWK hos­pi­tal in Hal­i­fax. She and her mother, Su­san, must travel in a van with close to 400,000 kilo­me­tres on the odome­ter and mul­ti­ple me­chan­i­cal is­sues.

A GoFundMe cam­paign has been launched for the pair but it’s a long, slow trip to­wards their goal of $60,000 – the amount re­quired for a van with a mo­tor­ized wheel­chair lift. In the past six months, just $2,700 has been raised.

It was Su­san’s mother, Mar­ion Fitzger­ald, (who died in Fe­bru­ary) who first no­ticed Jalissa’s symp­toms as a baby.

The in­fant’s hands were the size of a two-year-old’s. She had a con­tin­ual thick, white mu­cous dis­charge from her nose and couldn’t be placed on her back be­cause of se­vere pain from her crooked spine. She had a pro­trud­ing fore­head and un­usual fa­cial fea­tures.

Tests were done and the MacLel­lans awaited the call.

“When we heard the news, our whole world changed,” said Su­san.

A bone mar­row trans­plant match could help halt pro­gres­sion of the dis­ease but none could be found in North Amer­ica.

When a donor was fi­nally lo­cated, a lucky break re­sulted. Jalissa’s graft was highly suc­cess­ful and a long life ex­pectancy is now pos­si­ble.

Af­ter 13 surg­eries on her back to cor­rect her spine, Su­san says Jalissa’s last one, when she was nine, went ter­ri­bly wrong. She can no longer walk. The care re­quired to keep her healthy is enor­mous.

She must be turned three times dur­ing the night to pre­vent bed­sores. She con­tin­ues with ortho­pe­dic ap­point­ments be­cause of her spine. She sees a gy­ne­col­o­gist, op­tometrist, den­tist and au­di­ol­o­gist in ad­di­tion to re­quir­ing reg­u­lar blood­work and breath­ing tests.

“I just got a call yes­ter­day that they need us up there (Hal­i­fax) for an MRI and I don’t know how we’re go­ing to get up there,” said Su­san.

The van they use was re­ceived in 2005 as a sec­ond­hand ve­hi­cle and was funded by the Pres­i­dents’ Choice chil­dren’s char­ity.

Ev­ery five years, an­other ap­pli­ca­tion can be made to see if they qual­ify for an­other $20,000.

Now, how­ever, Su­san has back prob­lems and pinched nerves in her neck and shoul­ders.

“I’m not sup­posed to be lift­ing but I have no choice. There’s just her and me here,” she said.

“What we’re look­ing at, to save my back and it would be a lot eas­ier on us, is to get a van with a mo­tor­ized wheel­chair lift.”

These ve­hi­cles can cost in the vicin­ity of $60,000.

Although the Shriners do help out with some costs as­so­ci­ated with trav­el­ling, life is of­ten still tight and trou­bled for the MacLel­lans.

CARLA ALLEN

Su­san and Jalissa Ma­cLel­lan travel for doctor ap­point­ments in Hal­i­fax driv­ing a van with 400,000 kilo­me­tres in it. It has mul­ti­ple me­chan­i­cal is­sues. A GoFundMe cam­paign is un­der­way to raise enough money for a van with a mo­tor­ized wheel­chair lift.

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