Jack Dalla Costa is unlike most 15-year-old boys living in Gympie.
From the tender age of seven, Jack and his parents Emma and Jason received news that would be life-changing for the entire family.
“He actually came down with swine flu which knocked him about for months,” Mrs Dalla Costa said.
“It was about six months later when we asked him to come to the table for dinner one night that 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’.”
At the time, the family lived in Weipa in Far North Queensland and voiced their concerns with their doctor.
“They did a muscle biopsy and that came back with Duchenne muscular dystrophy – a rare muscle disorder. It’s a genetic disorder affecting about one in 3,500 boys worldwide.”
Heartbreakingly, the male-dominant disorder has no cure and is a degenerative illness.
“Many boys with Duchenne’s have a life expectancy in their early 20s,” 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.”
Every three months, Mrs Dalla Costa takes her son for medication infusions at the Sunshine Coast University Hospital (SCUH) and every six months to the Lady Cilento Children’s Hospital in Brisbane.
Jack receives regular care under the paediatric team at Gympie Hospital, however many of his specialists are based at SCUH.
It’s the reason the Dalla Costa’s have thrown their support behind a $19,532 Telehealth Service for Gympie Hospital’s Paediatric Room to connect the region’s young patients with top paediatric specialists at SCUH, and Wishlist’s project to provide family accommodation close to SCUH than their current facility, Reed House at Nambour.
“This Telehealth 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.
“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). The teleconferencing would be a huge additive to Gympie Hospital.”
Gympie Hospital Acting Director of Nursing Nick Jones spearheaded the innovative Telehealth campaign to help patients like Jack.
“The Telehealth Service is the main fundraising cause of the Wishlist Jazz and Wine Festival this Saturday,” Mr Jones said.
“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.
“This will support patients and families, improve health outcomes and provide timely expert advice. It will also assist in the transfer of unwell children to receive the specialist care they require, while also giving us the option of patients remaining here at Gympie Hospital with care provided locally.”
Wishlist is also focusing fundraising efforts on providing family accommodation close to SCUH so that families forced to travel have an affordable accommodation option close to the hospital.
Mrs Dalla Costa said the staff at Gympie Hospital continually “go out of their way to help” her son.
“Jack is in a wheelchair and unable to care for himself with bathing and toileting, the hospital is the only facility that has a hoist that Jack can use. He is happy to go there and the nurses are always welcoming.”
“He even gets an ultrasound-guided cannula to find his veins on the screen before they put the drip in. This avoids Jack getting multiple jabs while trying to find his well-hidden veins.”
The hospital also helps the family with overnight respite.
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 event has raised more than $62,500 in the past two years for Gympie Hospital and features an afternoon of live music, delicious cheese platters from Kenilworth Dairies, and a wide selection of fine wine from Get Wines Direct, beer and other beverages, plus a gourmet barbecue.
Wishlist Jazz and Wine is sponsored by Schuh Group, The Gympie Times and Zinc 96.1.