Toby's Cockayne Syndrome Conference Med Care Fund

My name is Nicole and I am mother to Toby, aged 9, who has Cockayne Syndrome.

CS is an extremely rare, progressive, degenerative condition that affects the brain, body, and all aspects of health and development. All symptoms worsen over the course of the child's life, and the condition becomes increasingly complex. The median age a child with CS passes away is just 12.4 years of age.

Toby is only one of six Cockayne Syndrome cases in Australia. No medical personnel here specialise in CS, and no CS support organisations exist. The most significant charity and family support organisation for Cockayne Syndrome, Amy & Friends, is in the UK.

We seek sponsorship to assist our family in attending Amy & Friends Cockayne Syndrome Annual Conference in the UK. The conference is attended by medical professionals and researchers from around the world who specialise in Cockayne Syndrome. Families living with Cockayne Syndrome can access information to inform the treatment and care of their loved one and connect with others who truly understand this difficult journey.

Toby's care is ongoing and will intensify as his condition worsens. We will also use funds raised to access medical care, equipment, resources, and supports not funded by NDIS.

Donations of any amount are greatly appreciated in helping us give Toby the best treatment and care.

We THANK YOU and ask if you could please SHARE this fundraiser.