‘Why not?’: Eight-year-old Broome girl with rare genetic condition to take on 660km Gibb River Road Challenge

An eight-year-old Broome girl diagnosed with a rare genetic condition will be the first disabled child to take on the gruelling 660km Gibb River Road Mountain Bike Challenge this month. St Mary’s College student Kelsie Stewart is one of just 1200 people living with glycosylation worldwide — an umbrella term for a group of more than 130 rare genetic metabolic disorders. Kelsie’s specific condition — CDGA1 — primarily affects her physical capacity, meaning she relies heavily on mobility assistance tools such as a walker. The eight-year-old will be riding in the five-day fundraising event from May 12-16 alongside Team CDG Superheros, cycling from Derby to El Questro Station near Kununurra. The team will be raising money for the Saba Rose Foundation and the Kyle Andrews Foundation, while also raising awareness of Kelsie’s rare condition and funds for equipment and physical therapy. Kelsie’s mother Lee Stewart said the challenge had always been a bucket-list item, but admitted she was “petrified” of the upcoming challenge. However, she was blown away by the Broome community’s support. “That community spirit that we have in Broome, it’s coming with us,” Ms Steward said. “It’s coming attached to all five kids that are going to be riding with us down the river side by side.” “To see all my kids doing the same thing at the same time — it’s going to be something beautiful. “We’re aiming to challenge the way in which our community programs are being run, ways in which our community is physically set up for (Kelsie) to access, so why not set it at one of the biggest challenges in the Kimberley to bring attention to it all? Why not?” Since announcing their plans to complete The Gibb Challenge, the Broome community has rallied behind Kelsie and her family in as many ways as it can, including Broome Cycles, which donated a custom-built electric bike to accommodate her needs. Broome Cycles manager Michael Edward Fleeton said the business had to customise a non-electric tricycle and fit it to tackle the rugged Kimberley terrain. “The Gibb is quite bumpy,” Mr Fleeton said. “There’s going to be a lot of corrugations and it’s going to be dusty, but luckily with this kit everything is secured and sealed so no dust can get into the important things. “I’ve never had to do anything like this before. I’ve never made a normal bike, or electronic bike, so it’s all a bit of a learning curve, and I’ve always wanted to do something like this.” The tricycle had to be assessed by Kelsie’s occupational therapist and physiotherapist to see if it would be suitable for her physical needs and prevent any injury. “Her physical make-up is the challenge, to be honest, especially her hip dysplasia,” Ms Lee said. “Kelsie’s fatigue is going to be playing a part in her ability to bounce back, so her muscle fatigue as well is going to be huge. “I usually have to massage Kelsie at night, and that’s going to be an increased challenge, being a lot more hands-on remotely. “She also wakes two to three times a night still, so we’re going to have that interrupted sleep and we’re going to need to be lifting her during the day a little bit more. “Plus during the physical ride ourselves, there’s going to be some massive emotional parts in the sense that we are actually doing this. “But we are so prepared, probably the most neurotically prepared, because we don’t know what to expect.” In addition to the Gibb Challenge, CDG Superheros is holding a raffle with a prize pool of nearly $13,000 with only 2000 tickets available Statewide. Tickets to raise vital funds for the challenge and foundations can be bought at www.rafflelink.com.au/2024-gibb-challenge.