Toby's Sun Shield

At just 10, Toby lives with Cockayne Syndrome, a rare and devastating life-limiting form of childhood dementia. Fewer than two children per million are affected, and Toby is the only known case in Western Australia. His DNA cannot repair itself, causing his body to age at a heartbreaking pace. He is gradually losing his eyesight and hearing, his mobility, and the skills he has worked so hard to master, all while developing painful joint contractures and muscle spasticity.

Toby has already seen more doctors in his short life than most people will ever meet. He attends weekly physio, occupational, and speech therapy, and is a frequent visitor to Perth Children’s Hospital, where he is cared for by multiple specialist clinics.

On top of this, Toby suffers from photosensitivity, an extreme reaction to sunlight that causes severe burns within minutes. Each moment in the sun adds to irreparable DNA damage, worsening the progression of his condition.

Despite these challenges, Toby’s favourite activity is swimming. The water brings him relief from pain, helps maintain mobility, and gives him the chance to just be a kid. But because of his photosensitivity, time in the pool is limited, leaving him missing out on play, therapy, and treasured moments with his brother and sister.

A shaded pool will change everything. It will give Toby the chance to splash, swim, and laugh safely, free from the dangers of the sun. It will allow him to continue vital therapy, spend precious time with his family, and enjoy the simple joy of being a child.

Your support will help Toby live his best life.