My Name is Maria Liistro and I am the Founder of the Trichotiodystrophy , Xeroderma Pigmentosum and Cockayne Syndrome Trust Fund . We are seeking support in sponsorship
I am writing to you in order to seek funding for a very special and unique group of individuals who have been disadvantaged by a extremely rare and life threatening illness called Trichothiodystrophy , XerodermaPigmentosum and Cockayne Syndrome.These individuals are all allergic to UV light and it causes neurological and life threatening damage to their cells , immune system , brain and other vital organs .
Part of the effects of the condition are that the families experience isolation,loneliness and suffering , the families also experience severe financial hardship due to trying to endlessly protect their children from the harmful UV rays of light , how do they hide from light ?Most areas and centres are Light filled causing many problems for those who suffer with these conditions .
The Friends of Sammy-Joe Foundation was founded by Me ,I am Sammy-Joe’s mother Maria Liistro. The Foundation aims to assist sufferers of rare genetic life threatening illness Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne Syndrome
The Foundation seeks to raise funds to enable sufferers to enhance their quality of life, by providing financial assistance for costs including medical bills and other related costs including solar protective clothing, sunscreens, necessary tinting of windows, and medication aides and therapy sessions which are not covered by government assistance.
The Families experience poverty and struggle and also are very socially isolated so we would like to break down these barriers withing society for them and create change for their lives for the better .
The committee formed four years ago to support me in raising funds for children and young adults and adults.
The funds provided the children with the essentials and also further raised awareness and helped find other sufferers of the Condition.
The creation of this Trust was envisaged and planned over many years by me. I sourced legal assistance and found Trustees, in 2006
I approached Clayton Utz solicitors to work on the Foundation as Pro bono and finally in 2007 the Trichothiodystrophy, Xeroderma Pigmentosum and Cockayne's Syndrome Trust Fund was endorsed.
I have a passion about increasing awareness of these debilitating conditions and of increasing support available for individuals and families affected. The families experience extreme bouts of isolation as all the sufferers are allergic to light .All sufferers also experience mental illness, cognitive impairment and psychiatric disabilities as the conditions are neurological and degenerative.
The aims of this Trust include enhancing the quality of life; maximizing the abilities of family members in the care of their child/young person; increasing community awareness of these conditions; and supporting the financial costs associated with the needs of these children/young people.
Amongst other effects, those affected by the above three conditions have an extreme sensitivity to UV light. The main effect of UV light exposure is irreparable damage to the immune system, organs and DNA, it is a neurological disorder and sufferers also suffer severe mental breakdowns , intellectual disability and also psychiatric trauma
Also, the effects a person with typical UV skin protection will experience after an extended period of time in bright hot sunlight can be received from an indoor fluorescent light in a matter of minutes when affected by these disabling conditions. All of the children and young adults affected are quite disabled and have neurological problems. 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, metal shutters on windows, while having curtains drawn, therefore 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 or 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 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, even visits to the home 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 sometimes was 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 being disadvantaged in all areas of life.
There are 10 other children and young adults in Victoria alone like him .There are 40 Children in Australia and 134 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 10 children in Victoria , 20 in NSW and 7 in Queensland ,3 in WA I am pretty certain that we will find more as numbers are increasing.
The school environment cannot protect them 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; 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. We need help with funding so that we can provide teachers , therapists and other educational needs for these children and young adults who are very isolated
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 ..
Delfin and its 25 partners from local and major businesses commenced construction March 2008 on an outdoor play area, the construction adjoins to 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, but would also provide 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, 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
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
To model and support developmentally appropriate play experiences and parenting Practices or all sufferers who are allergic to UV rays and their families
To provide an area for the children and young adults to meet in a safe environment and provide an opportunity to play outdoors away from the sun
Because the running costs of the group are quite high we are seeking funding to enable us to run the groups for another year in the purpose built pavilion which is situated in the base of the Foundation and Charity quarters.We also hope to alleviate the loneliness , isolation and suffering that these individuals and their families experience.
The funding will be beneficial to the children , young adults and adult s who suffer with Trichothiodystrophy , XerodermaPigmentosum and Cockayne Syndrome .
I do hope that our application is considered as we are a unique group and have come along way to band together and make a difference for each other ..
The Friends of Sammy-Joe Foundation is solely run by Volunteers who donate alot of their time to achieve positive outcomes and to make a difference to these very special lives.
we are a small and New Charity with big values and big plans
Founder and Volunteer CEO
Of The Friends of Sammy-Joe Foundation
The Trichothiodystrophy , XerodermaPigmentosum and Cockayne Syndrome Trust Fund.
We are a non for profit organisation and have DGR status and TCC which means we are income tax exempt , and we need help with raising funds
we are having a Trivia night on the 13 th of October 2012 at Martin Reserve at the Hadfield Football Club 85 Box Forest Rd Hadfield 3046
they have been great supporters to us , we need items for Auction and to raffle and also any funds donated will go towards helping the children
please help us with our great cause call
The Friends of SammyJoe Foundation has been established to help create a better life for those suffering with Trichothiodystrophy ,xerodermapigmentosum&CS
To Create A Better life for those who are suffering with Trichothiodystrophy ,Xeroderma Pigmentosum and Cockayne syndrome