Telethon: Christmas comes early for Jamieson household after being gifted pool shade for sick son, Toby

Ten-year-old Toby Jamieson is an avid swimmer, but his condition — the only known case in WA — means he is unable to spend most summer days in his family pool.

The Telethon Champion lives with with Cockayne Syndrome — a rare genetic disorder which prevents normal DNA repair, leading to rapid ageing and photo-sensitivity.

Mother Nicole Jamieson said even minimal sun exposure could be dangerous.

“He burns within a couple of minutes in the sun, he’s intolerant of sun cream and the pool is his favourite place,” she said.

“It was problematic for us because he loves being in the pool and we don’t want to deny him that, but we know that having time in the sun is going to damage him, which has taken time off his already shortened life expectancy.

The Jamieson’s were this month gifted a retractable pool shade thanks to the Telethon Home Builder Home Group and Build Now Foundation.

Just this week, Toby was also treated to a surprise visit by Fat Cat and Santa, who showered he and his siblings with Christmas presents and pool toys, before going for a dip in the pool.

Father Andrew Jamieson said the shade had changed the “whole dynamic of our family”, and said he was overjoyed to watch his son spend more time in the pool.

“During the middle of summer, because he loves the pool it was a constant struggle for us to say, ‘You need to wait for a bit later on when the UV is a bit less,’” he said.

“Of course, (Toby) is a child, he didn’t understand that, so to have this in the middle of the day, blocking 90 per cent of the UV rays for him, is an absolute blessing.

“To see your kids happy is what any parent wants for their kids.”

Ms Jamieson described the pool shade as a “game-changer”, and said she was lost for words with gratitude.

“We’ve had some really hot weather lately, and 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 said.

“It’s really special to not deny what’s a really important part of Australian childhood (which is) being outside and enjoying the pool so he can just live life, and that’s what we want for him.

“We’re incredibly grateful and so blessed, I don’t even have the words to tell someone how much it means to us.”

Build Now Foundation founder Stephen Mansfield said it was a privilege to give back to the WA community, and said he was thrilled he could alleviate some of the parents’ stress.

“When I first got introduced to Nicole and Andrew, they were explaining to me how it makes it really difficult for them to be able to try and control the narrative when Toby’s brother and sister are in the pool and Toby wants to get in with them,” he said.

“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.”

“To be able to give back, especially at this time of the year when you know that there are kids out there who don’t have it as good as others, and to know that we’re going to bring a smile to Toby’s face just before Christmas ... just fills my heart.”