Gympie teen suffering rare health battle needs your support
THE family of a local teen suffering with a rare muscle disorder have thrown their support behind Gympie Hospital's bid for a crucial specialist service worth almost $20,000.
Jack Dalla Costa, 15, was only seven years old and living in Weipa with his parents Emma and Jason when he received life-changing news.
"We asked him to come to the table for dinner one night (and) he literally couldn't stand up and make his way over - he was basically crawling and my husband and I looked at each other said 'something isn't right',” Jack's mother said.
"(Doctors) did a muscle biopsy and that came back with Duchenne muscular dystrophy. It's a genetic disorder affecting about one in 3,500 boys worldwide.”
Jack had already suffered a severe bout of swine flu just months before being diagnosed with the male-dominant disorder, a degenerative illness with no cure.
"Many boys with Duchenne's have a life expectancy in their early twenties,” Mrs Dalla Costa said.
"We feel very lucky to have Jack with us right now, but it is hard watching this happen to our son, and for his sisters watching his abilities being taken away from us each year.”
While Jack receives "regular care” under the paediatric team in Gympie, crucial medication infusions are only available at the Sunshine Coast and Brisbane.
Mrs Dalla Costa supported the hospital's campaign for the $19,532 Telehealth Service to connect the region's young patients with top paediatric specialists at SCUH, along with Wishlist's project to provide travelling families with accommodation closer to SCUH than their current facility at Nambour.
She said the service's availability would help families avoid "huge” travel days.
"This service would allow Jack to get specialist advice in Gympie. It would be ideal because otherwise we have to travel to the Sunshine Coast to meet these specialists and it's a huge day,” she said.
"For parents with sick kids, it's an hour and a half each way, taking his wheelchair in and out and also organising the rest of the family (Jack has four sisters).”
Gympie Hospital Acting Director of Nursing Nick Jones led the Telehealth campaign.
"We really want to get this piece of equipment and associated software to our hospital to provide specialist advice and guidance for our paediatric patients through videolink,” Mr Jones said.
Wishlist will raise funds for the Telehealth service at Saturday's Wishlist Jazz & Wine Festival at Gunabul Homestead.
VIP tickets have sold out, but $30 general admission tickets are still for sale.
The all-ages event has raised more than $62,500 for Gympie Hospital in the past two years and features an live music, cheese platters from Kenilworth Dairies, a selection of fine wine from Get Wines Direct, a gourmet barbecue and more.
Wishlist Jazz and Wine is sponsored by Schuh Group, The Gympie Times and Zinc 96.1.
For tickets visit wishlist.org.au. Tickets are limited.