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JAZZ & WINE TICKETS AT THE GATE

The Wishlist Jazz and Wine Festival on Saturday will feature live music acts, gourmet food, fine wine and plenty of fanfare, but it will benefit countless Gympie and Cooloola families.

One of those families is the Bugden’s of Gympie – mum Carmel and her two children 15-year-old Samuel Bugden and daughter Chloe Bugden, 13.

The trio have a rare genetic disorder called Osteogenesis imperfecta, also known as brittle bone disease.

The genetic disorder results in bones that break easily plus other symptoms including a blue tinge to the whites of the eye, short height, loose joints, hearing loss and breathing problems.

brittle bone disease“Sam was nearly two when he was diagnosed. He’s had about 14 breaks so far, my daughter has had three and I’ve had six breaks,” Mrs Bugden said.

“When we fall – we break. Everything we do, we have to do a risk assessment. It’s just something we have to live with.”

For the past 18 months, Chloe and Sam have been seeing paediatric specialists for infusions to help strengthen their bones.

“Sam receives his infusions every four weeks at Gympie Hospital and my husband Stephen takes my daughter to the Sunshine Coast University Hospital (SCUH) for her infusions every three months.”

“The infusions take about three hours plus a 30 minute flush out. Some days it can take most of the day.”

Mrs Bugden said the infusions appear to be working, but they can be traumatic for the children.

“My son fell off the steps at school and hurt his elbow. He came home from school like a normal child – he just had some scrapes and scratches on his elbow and that usually would have ended in a break.”

Gympie Hospital foundation Wishlist will be fundraising for a $19,532 Telehealth Service at this weekend’s Festival for Gympie Hospital’s Paediatric Room to connect the region’s young patients with top paediatric specialists at SCUH.

telehealth

Wishlist CEO Lisa Rowe said the service would help the region’s young patients, like Samuel and Chloe, to have the option of getting specialist advice in a timely manner without having to travel the 90km to SCUH.

The Telehealth service is just one of the initiatives Wishlist is working on for Gympie families.

“For those who do have to travel, we are planning to build Family Accommodation as close as possible to SCUH to allow remote and regional families to stay close to their loved ones in critical times of need,” Ms Rowe said.

“Currently we have Reed House, a beautiful 20-room facility next to Nambour Hospital, and we offer a shuttle service from Reed House to SCUH for patient appointments.

“But we’d love to add another affordable option for families even closer to our tertiary hospital at Birtinya.”

Tickets are available at the gate of the Wishlist Jazz & Wine Festival which kicks off at 2pm until 6.30pm at Gunabul Homestead tomorrow (Saturday).

General admission is just $30. VIP tickets have sold out.