Hi, my name is Jon Vasant and I am urgently raising funds to honour my Aunty Jacqui’s dream of providing a loving family life for a 17-year-old child, diagnosed with Juvenile onset Huntingdons Disease. JHD is a very slow and cruel, rare disease. Our little loved one, 'Ash', will lose the capacity to use his limbs, as well as the ability to speak and eat and suffer from other symptoms such as mental health degradation and cognitive impairment. There is no cure.

Aunty Jacqui, a support worker, died suddenly in July 2021 and her children came to live with us in the city, having spent almost all their lives in the country. Now that Eliane, Jacqui's sister, has guardianship of Ash, we are trying to move overseas so it is possible he might benefit from research into slowing the symptoms of the disease but are caught in a difficult situation, where the private sale of our home has been delayed and the deadline for leaving Australia before the child turns 18 is now only weeks away. We are asking for your kind donations now, to help facilitate the move, with the family pledging to pay forward every dollar donated to various not-for-profit groups, supportive of children suffering from JHD, both here and overseas, once the sale of the home is completed.

We have been informed that when Ash turns 18 the law here requires he has a guardian for his adulthood, due to his medical condition and the slow process of applying through courts would start all over, costing Ash extra months of waiting to be seen by the overseas medical research team. At this stage Ash is refusing to see the doctors here and may be forced to by the legal system, which would add to the trauma of all he has already endured. Keeping Ash as calm and happy as possible is vital to his mental health.

Jacqueline Murphy was a beautiful and complex woman, a mother of two who welcomed a third child, in much need, into her home. Jacqui, as she was known to family and friends, was a gifted support worker, much loved by some and underappreciated by others. A survivor of major childhood trauma and a destructive relationship, Jacqui was one of those rare women who walked away from abuse, without returning, to struggle against a broken system and not give in. For years she put the needs of all of the children and some of her clients ahead of her own needs, as so many have done and are still forced to do.

Jacqui found a beautiful, low-rent home in the country, with a paddock for her daughter’s pony and a massive tree for a tyre swing, with room for the children to ride their bikes, run and explore, but it was in Yarloop. In January 2016, the house burnt to the ground in a devastating bushfire. The family restarted their life with the few personal possessions and pets they had managed to fit into the car with them when they evacuated and were so very grateful to the amazingly generous members of the public who donated to them and all the survivors of the fire.

Years later, I am asking you to kindly donate to this family once again, this time through Gofundme, knowing that Eliane will take great care to see that the funds will be re-donated to very worthy groups, dedicated to improving the quality of life experiences of others, such as the Riding for the Disabled group that has given our child so much joy that he did not even realise he was getting exercise and fresh air, while socialising in a beautifully positive environment as well. With every day of being able to move and speak so precious to this child we must re-locate as quickly as possible and wish to fulfil Jacqui's dream of always being there to give love and support and for Ash to have the people who love him most, make decisions for him in the future, when he is no longer able to. This is the child's deepest wish and we want to see him living happily out in the country again, fulfilling his keen interest in the environment by helping us to replant a section of native forest, while he can.

Jacqueline was found dead in her bedroom in Australind by her 19-year-old son, on the evening of the 3rd of July, 2021. She is greatly missed by her family, friends and past clients. We have been told the cause of death is still under investigation.

You might notice that this site has been running for over a year. Initially, we started the site to raise funds for Jacqueline's memorial, Ash's schooling, the needs of Jacqui"s biological children and to give them all the best Christmas we could, after Jacqui's passing. Unfortunately, someone falsely reported it as a fraud, which caused the children no small amount of anguish. They had been so excited that people might help them. We have started again as the situation has changed and is now urgent. Donations now will be spent on flights, modest accommodation and transport, food and some small amount of recreational activities and one piece of technology needed for the eldest's studies. Ash is going to need dental treatment shortly, so we have also accounted for this should it become urgent and added a small amount to cover any extra delay or emergency. Once settlement of the house here is complete we will resume all costs ourselves and pledge to pay all donations forward, within three months. We have tried banks and lenders, however as Eliane can only work limited hours due to caring for Ash, her income is considered too low to cover repayments, regardless that she is selling her home to finance the move and resettling in another country and could therefore easily repay, in a short time, any loan given now.

Please help me honour Aunty Jacqui's wish for a happier life for Ash, who wants to live life every day with the family. Help me put smiles back on the faces of my family. They have already suffered so much trauma in their lives. Even the smallest of donations would be greatly appreciated. We would love it if you would share this appeal with your friends. Thank you so very much.

Jon Vasant