For a Perth family, the spirit of Christmas arrived early this year, bringing a life-changing gift that has unlocked endless summer joy for their young son.
A Rare Condition and a Love for the Pool
Toby Jamieson, a ten-year-old Telethon Champion from Western Australia, lives with an extremely rare genetic disorder known as Cockayne Syndrome. This condition, which impairs normal DNA repair and causes rapid ageing and severe sensitivity to sunlight, is the only known case in the state. For Toby, an avid swimmer, his love for the family pool was fraught with danger, as even brief sun exposure could cause serious harm.
"He burns within a couple of minutes in the sun," explained his mother, Nicole Jamieson. "He's intolerant of sun cream, and the pool is his favourite place." The family faced a heartbreaking daily dilemma: allowing Toby to enjoy his favourite activity risked accelerating his condition, yet denying him was equally painful. "Having time in the sun is going to damage him, which has taken time off his already shortened life expectancy," Nicole said.
A Community Gift That Changed Everything
This month, the Jamieson family's struggle was dramatically alleviated thanks to the Telethon Home Builder Home Group and the Build Now Foundation. The organisations collaborated to install a retractable shade over the family pool, a structure that blocks a remarkable 90 percent of harmful UV rays.
The impact was immediate and profound. "It's changed the whole dynamic of our family," said Toby's father, Andrew Jamieson. He described the previous constant struggle of having to tell Toby to wait until the UV index dropped later in the day. "To have this in the middle of the day... is an absolute blessing. To see your kids happy is what any parent wants."
Nicole called the shade a "game-changer," especially during recent hot weather. "He's been able to just enjoy being outside in the place that he loves the most, without discomfort and without us being anxious and worried about him," she shared, emotionally adding that the family felt "incredibly grateful and so blessed."
Surprise Visits and a Heartfelt Mission
The generosity didn't stop at the pool shade. In a festive surprise just this week, Toby and his siblings were visited by Fat Cat and Santa Claus, who arrived bearing Christmas presents and new pool toys from the Home Group Run Club, followed by a celebratory swim.
Stephen Mansfield, founder of the Build Now Foundation, said it was a privilege to give back to the WA community and help alleviate the family's stress. He recalled learning how difficult it was for Toby's parents when his brother and sister were in the pool and Toby wanted to join them. "When he's in the pool, he's completely protected, and we know that he has that peace of mind and his parents do as well," Mansfield said.
"To be able to give back, especially at this time of the year... and to know that we're going to bring a smile to Toby's face just before Christmas... just fills my heart," he added. For the Jamiesons, this gift means more than just shade; it means their son can simply live life and enjoy a quintessential part of an Australian childhood, safely and happily.
