Fundraiser for six-year-old Broome girl Kelsie Stewart with rare genetic condition smashes target

A sea of green took over Cable Beach on Sunday afternoon with dozens of Broomies heading down for a dance party in support of local six-year-old Kelsie Stewart, who was diagnosed with a rare genetic condition. The event was organised by Kelsie’s mother Lee Stewart to raise money for the Saba Rose Button Foundation, a charity that provides financial support for children with special needs like Kelsie so they can access physiotherapy and specialised equipment. Participants donned all green, the Saba Rose Foundation colour, and dug into their pockets raising more than $2000, with Ms Stewart hailing the fundraiser a resounding success. “From the bottom of our hearts, we thank you for your support,” she said. Kelsie has been fighting her rare genetic condition, congenital disorder of glycosylation, since the day she was born. CDG is an umbrella term for a group of more than 130 rare genetic metabolic disorders that affect how the body breaks down food and turns it into proteins required to function properly. Kelsie’s specific type of CDG — CDGA1 — primarily affects her physical capacity, meaning she must walk with a frame. “She also has severe hypotonia which is lack of muscle strength, an atrophy of her cerebellum which affects her balance and a weaker immune system,” Ms Stewart said. Ms Stewart said she started fundraising for the Saba Rose Button Foundation after it supported Kelsie by hosting small gatherings with Kelsie’s friends and classmates. This year Ms Stewart has gone all out, organising a dance party at Cable Beach with dozens of children and their parents coming down to move their feet to the music. But it hasn’t always been dance parties and fun for Kelsie and her family with Ms Stewart describing the arduous journey to Kelsie’s diagnosis. “We knew very early on that Kelsie was not hitting the developmental milestones that most children do by her age,” she said. “We kept getting told by our community health nurse that each kid develops differently and all the while in the back of your head you’re going something’s not right.” Eventually, Kelsie and her mother were sent down to Perth Children’s Hospital for an extensive diagnosis process. “We were sent back to Broome with an 85 per cent confirmed diagnosis of CDG and I was shattered, absolutely destroyed,” she said. “Our whole life changed, we stayed at home more we became isolated and then with my partner, you kind of withdraw from them because you’re so focused on Kelsie. “Sometimes I just need that one day to let loose and cry and that’s the side of it, which is pretty raw and honest, that people don’t see. “But she has become this special little person and people light up when they see her.” You can donate to the Saba Rose Button Foundation by going to their website sabafoundation.org.au/want-to-help.