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Support Network / Trust Fund

Delfin, and its 25 partners from local and major businesses, commenced construction in March 2008 on an outdoor play area. The construction adjoins the Liistro family home. The aim of the play space is to allow Sammy-Joe and others who suffer with Trichothiodystrophy, XerodermaPigmentosum and Cockayne syndrome to play outdoors without the danger of exposure to UV rays. It also provides a place of recreation and enjoyment for other sufferers of TTD, XPD and CS. The area includes remote- controlled roller shutters, rubber-matted flooring, a trampoline, a turtle habitat, a basketball area and an adult retreat. It also includes a storage facility for games and toys, UV sensitive lights, an air-conditioning and heating system, a wheelchair ramp, a rainwater tank, and indoor and outdoor lighting WHICH is solar protective and does not emit UV. The play area is worth more than $180,000, and enables children/young adults to play in an area that controls the amount of UV light entering the room. The play area provides a meeting point for parents and their children to support one another in an environment where the children are safe from the sun. Delfin Lend Lease assisted in the co-ordination of the project and donated $50,000 in helping to secure other donations. The aims of the group are to: - To provide developmentally appropriate play experiences - To encourage growth and development in the group of the children - To support parents in developing skills and knowledge with their children - To develop a social network who respects the individual and the children - To create pathways to related services and organisations - To create an opportunity for parents to meet in a non-judgmental and supportive environment, where experiences can be shared, and establish supportive networks that increase their ability to function to their full potential - To create an environment of trust that is physically and emotionally safe and supportive - To facilitate friendships between parents/carers; encourage the social development of each parent - To stop the isolation, suffering and loneliness that these individuals experience, some have described their experience as feeling INVISIBLE in society - To facilitate parent’s community connectedness and independence, and create pathways to other services Objectives The objectives of the supported parent playgroups are to: - Reconnect the families back into the community and help them to feel socially accepted within the community. - To help create a better life for the children, young adults and adults who suffer with Trichothiodystrophy - To promote improved outcomes for children, increase parent confidence and capacity, and support the establishment of social networks to help eliminate fear of being overly exposed to UV rays, and to help increase a better quality of life by being able to play in a safe, well protected environment

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