Sing Kiaana Home

Kiaana is a delightful young woman with a strong independent spirit,  a fabulous sense of humour and a sense of optimism that is inspiring for all who know her. Kiaana lives with a very rare degenerative condition called CLN3 or Juvenile Batten Disease . CLN3 is a form of childhood dementia that so far is always fatal, typically in the early teens to early 30s. Symptoms begin around age 5 and  include increasing vision impairment, speech loss, cognitive decline, loss of mobility, seizures, incontinence, muscle stiffness and spasms, swallowing disorder, night terrors, emotional dysregulation and temperature dysregulation. Families live with the constant grief of watching their children lose skill after skill and fade away before their eyes. Kiaana is 25 and despite significant decline in skills over the past few years, she is what we call a rare case of a rare case and is still kicking goals in so many ways. Kiaana has one of the slowest known progessions of CLN3 worldwide. But at the beginning of COVID Kiaana had a sudden hospital admission that had the family suddenly preparing to say goodbye. But through the determination and tenacity of a mothers love, Kiaana's inner drive, connection to family and community,  a concerted team effort from support workers and therapists, and a whole lot of blessings from up above, Kiaana has made a miraculous recovery and is once again back on her feet and giving life life everything she has to give. Kiaana loves horses, loves to sing, and loves working out at the gym. You can follow her story and her recovery on facebook  and youtube (coming soon).  About this time 2 years ago, Kiaana was in a precarious and increasingly dangerous situation in supported care while I was on the mend from a bout of carers burn out that had me temporarily relinquish her care a few years earlier.  While in care, my world unraveled and our family went through a series of unfortunate events and I became more and more disconnected from Kiaana as the advanced stages of CLN3 began to finally take hold of her. Feeling the ever increasing need to bring her home again, but knowing what is in store for her future and unable to see a solution to her long term care, I began to dream about a beautiful  country property with a house and a granny flat specifically built for Kiaana. I put it out there to the universe to raise about $800,000 to establish a forever home for Kiaana where I could live with her again, and where as a family we can gather around her in comfort and privacy to see out her days. In a series of now incredibly fortunate events and blessings, what came my way was an opportunity to establish a not-for-profit organisation from which to run her NDIS services and through this receive donations from a partnering service provider and help us save a deposit for a home for her. Kiaana has now been living on her terms for about 18 months, currently in a lovely short term mainstream rental  house in Aldinga, set up just for her, with a fabulous team of support workers that we have hand picked and trained to go on this journey with us. I manage her 24/7 support team and finally get to stay with her most days, (sleeping in the garage/laundry while she has someone attending to her at night time), her sisters visit regularly, and we now have a fabulous relationship again and a beautiful connection like I had never imagined. However, this is just a temporary option (with an open plan bathroom) that we took on while hoping to secure a loan and buy the property. Since moving her out of supported care in March 2019, she has already moved three times. The lease is up on 30 September here and the owners want to prepare the house for market and we need to move her out ASAP.  But there is nowhere suitable for her to go due to her accessibility needs. Despite selling Kiaana's childhood home in NSW to help fund a new purchase over here, and saving a decent deposit through the NFP, we are still only half way to what we need. And time is not on our side. There is now opportunities through the NDIS  (National Disability Insurance Scheme) to establish Specialist Disability Accommodation (SDA), and it is possible to become a self provider of an SDA home but you have to establish it first before you can receive the payments and there's lots of complications in the process. We hoped the banks would lend us the money, having saved a decent deposit, but we have had knock back after knock back and even the one bank who is actively lending to self providers of SDA has said no. Most likely due to her shortened life expectancy. They said as difficult as it is to have to do, they suggest we turn to the community to fund raise. We need a few acres, where we can live in a family oriented environment, in a side by side arrangement, where as the world becomes less and less accessible to Kiaana, we can bring the world to her, close to Aldinga where Kiaana's sisters live and work, and where her ther


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Alicia Brown 
Aldinga Beach, SA
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