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Support Network / Trust Fund

Low UV exposure results in reddened skin, blisters, vomiting, diarrhoea, nausea, muscle pain, dizziness, low-grade fevers, excessive sleeping and hair loss. Life spans are greatly shortened. Families who have worked to reduce their child's exposure to UV light have changed their whole family home with the addition of low UV emitting light globes and metal shutters on windows, whilst having curtains drawn - therefore, the whole family then live in darkened conditions in order to keep their child/young adult safe. The families are also disadvantaged and struggling to provide these extra requirements for their children, so they do experience extreme financial strain. Mostly the children need to be cared for by one parent while the other works as there is no educational, recreational or respite environment in the whole of Victoria or Australia that is completely UV protected to cater for these children. The Pavilion was purposely built to help reconnect these individuals back into the community and also to help provide recreational, educational, therapeutic and social opportunities for them. This project is to create broader recreational options for families and the sufferers of these conditions, and those who have a child/young adult with the above condition/s. Families' recreation is limited, as to where they can go as a family, or through the need to obtain expensive in-home care for their child/young adult with the above condition/s if the family cannot take them due to the light exposure the child/young person will encounter. Recreation and leisure options are greatly reduced for these families. Outdoor activities, brightly lit shopping centres and even visits to the homes of family and friends result in UV exposure with the above results. Sammy-Joe is the Ambassador to the Friends of Sammy-Joe Foundation, also known as The Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne syndrome Trust fund. He has not attended school for five years and when he did attend he was severely damaged and ill from all the light exposure he received, and was sometimes in a critical condition, thus missing out on many weeks of school due to this exposure. This illness limits the amount of time these children spend within an educational and social setting, thus them being disadvantaged in all areas of life. There are 20 other children and young adults in Victoria alone like him, with 36 children in Australia (and growing) and 196 worldwide to date. We hope to invite all children within Australia to travel to us and spend time with others in the purpose-built pavilion. We have 20 children in Victoria, 6 in New South Wales and 6 in Queensland, and I am pretty certain that we will find more as numbers are increasing. The school environment cannot protect these children from UV exposure. Part of the Mission of The Foundation, endorsed in 2007, is to enhance and maintain the quality of life of children/young adults; and to help families maintain a safe sun- safe environment .The benefits to these children and families will be immeasurable. The Foundation seeks to raise funds to enable sufferers to enhance their quality of life. Delfin Craigieburn, Naturform Pty Ltd and other Melbourne businesses banded together to build a special playground for Sammy-Joe Liistro, diagnosed with Trichothiodystrophy (TTD) - a rare genetic disorder which causes skin sensitivity and allergy to UV rays and fluorescent light. The play area also extends to other children diagnosed with the condition, and their families. I have set up and organised group sessions to enable all sufferers living within Australia, and especially Victoria, to attend these group sessions in the specially-built Pavilion.

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