Kiaana, with the support of her dedicated mum Alicia, inspires our community with her achievements and overcoming the odds.
Kiaana with Mum Alicia after a hydrotherapy session
In 2011 at age 16, Kiaana was diagnosed with CLN3 (Juvenile) Batten Disease, after more than 10 long years of trying to find answers. Now aged 28, Kiaana is a playful, music-loving young woman and an inspiration to other families fighting this same heartbreaking disease.
Speaking with Alicia, Kiaana's mum, she tells of the struggles and constant advocating to ensure the world sees Kiaana, and others like her, for who she is and what she is capable of - not just as a 'diagnosis' or defined by what's described on paper.
When Alicia was told about Kiaana's devastating diagnosis, she didn't know what or how to tell Kiaana. Kiaana has always been strong willed and did not like people talking about her without being included, especially doctors, so Alicia eventually decided it was best to tell Kiaana the truth. Kiaana was one of the first, and possibly only (at the time) young people with Batten disease, to know everything about her condition. Despite the diagnosis, Kiaana was determined not to give up and used the knowledge of her condition to empower her, and stand up and be seen and seek support and encouragement from people near and far. Kiaana is inspirational and shares her triumphs and challenges on her social media and loves to read responses of encouragement and love from her family, friends and followers.
In recent years, Kiaana has had two major sudden downturns that threatened to devastate as Alicia pushed for the hospital interventions, disability supports and care that Kiaana needed.
Kiaana was hospitalised over Easter 2020, after what at first looked like a panic attack that sent her into 4 days of delirium, temperature spikes and dystonic storms, just as the Covid 19 pandemic first hit South Australia. The hospital experience was so traumatising, during the first pandemic restrictions, that Kiaana deteriorated rapidly in hospital and suddenly it was looking like there was no coming back. Alicia was in shock having to answer questions like if she wanted her daughter to be resuscitated when just days before she was laughing, walking, talking, and eating with minimal assistance.
The cheerful, determined, go-getter that everyone knew so well, was now confined to a hospital bed, screaming at every intervention and the sound of every footstep, hugging her toy horse tightly, saying "home, home" over and over. This was a huge learning curve for all involved, and after a few med changes, Alicia knew she had to take Kiaana home, even though specialists at the hospital were in disagreement as to whether she should stay or go.
Home proved to be the best move for Kiaana, and the months that followed, saw Kiaana go from being curled up riddled with spasticity and anxiety, bed and wheelchair bound, to gradually regaining her strength, her tenacity, and her incredible sense of humour, and surprising everyone day by day, as she pushed through her physical and internal barriers and bit by bit, got back on her feet again and went through a miraculous recovery.
Unfortunately, in the 2 years that followed, Kiaana began to have seizures again (after 3 years prior seizure free). In Sep of 2022, the night before her twin nephews were born, Kiaana stood at the family dinner table and hugged everyone, wishing her sister well with the C-section booked for the next day. Her sister went into hospital in the morning to give birth by Caesar, and that night, Kiaana was rushed to emergency with status epilepticus, (recurrent seizures one after the other without recovery in between). Kiaana had 11 seizures before the ambulance had even left her home. Kiaana was intubated and put in an induced coma, for 4 days, while the doctors worked to get the seizures under control. At age 27, with a diagnoses of Juvenile Batten Disease, having been given a prognosis of late teens to early 20s, Alicia had a hard time trying to convince the doctors that Kiaana's life was nothing like what they seemed to be suggesting, but they couldn't see while she was under sedation.
Again, Alicia took the medical intervention required, including having a PEG (Gastrostomy/Gtube) put in, to support her recovery after intubation and then took Kiaana home as soon as the seizures were under control. With the introduction of lots of new seizure meds, Kiaana has not recovered quite as well as she did the previous time, often sedated much more than Alicia would like her to be. But even still, Kiaana's determination and tenacity shone through and with the dedicated loving support of her family and support team, she has gone from strength to strength, regained her ability to eat by mouth 95% of the time, and at 28 is still standing and weight bearing and taking steps in Mums arms, and Kiaana is still celebrated in her local community, for getting up on the dance floor at a Saturday night music gig, when the music takes control.
Despite the bleak outlook in the midst of the health crisis, Kiaana has made amazing and significant recovery each time, sometimes regaining back skills even weeks and months later that some may have thought to have been lost forever.
Alicia admits that with Batten Disease, there is expectation for loss over time, however she says that it’s so important to her and her family that Kiaana reaches her potential and is given every chance to have the best quality of life possible. This has meant ensuring the right equipment and supports at home.
Despite Kiaana's recoveries, Alicia has had to take Kiaana's NDIS plan to external review, because in late 2020, Kiaana was issued an inappropriate and under-funded plan, and simply something that was unacceptable to Alicia, for someone as amazing and determined as Kiaana is. It has taken 3 years, but due to that tenacity that Kiaana clearly gets from her Mum, they have have had some big wins through the AAT process and the NDIA has finally agreed to meet many of the disability support needs that Alicia has been advocating relentlessly for Kiaana to have access to.
As well as an increase in capacity building & therapy budget and an increase in 2-1 supports, to enable Kiaana to keep on her feet and keep moving, in her SDA home and community, NDIA have finally approved some much needed assistive technology. Second Skin for postural support, Motomed (exercise bike) that Kiaana can use while still seated in her wheelchair, an Oxford Journey stand-aid which is nicknamed ‘Oxi’ and a mobile hoist "Mo" with an ambulating sling that they call "Tetley". Kiaana stands every morning with the support of "Oxi" and "Uncle Larry Lazy Legs" (an under leg sling that she can sit down in if she needs to) to 2 songs, "Stand By Me" and Elton John's "I'm Still Standing", before sitting down for a peddle on the motomed, or a walk around the house, or sometimes around the block, in "Mo & Tetley". These crucial supports provide Kiaana and her support team with the opportunity to keep Kiaana safely standing, moving, walking, dancing and laughing.
If you have an affected child or young person and this story raises questions or areas of need for resources or support, please contact Liz Sanson, Family Support Coordinator for BDSRA Australia.
(left) Standing with Oxi and Uncle Larry Lazy LongLegs (right) Working out on the pilates reformer
(left) Peddling on the motomed (right) Dancing with sister Shani, while standing in the Permobile Corpus F5
Kiaana with her mum and sisters
(left to right) Shani, Alicia, Kiaana and Jaidene
Kiaana with her twin nephews
Kiaana with Mum Alicia after a hydrotherapy session
In 2011 at age 16, Kiaana was diagnosed with CLN3 (Juvenile) Batten Disease, after more than 10 long years of trying to find answers. Now aged 28, Kiaana is a playful, music-loving young woman and an inspiration to other families fighting this same heartbreaking disease.
Speaking with Alicia, Kiaana's mum, she tells of the struggles and constant advocating to ensure the world sees Kiaana, and others like her, for who she is and what she is capable of - not just as a 'diagnosis' or defined by what's described on paper.
When Alicia was told about Kiaana's devastating diagnosis, she didn't know what or how to tell Kiaana. Kiaana has always been strong willed and did not like people talking about her without being included, especially doctors, so Alicia eventually decided it was best to tell Kiaana the truth. Kiaana was one of the first, and possibly only (at the time) young people with Batten disease, to know everything about her condition. Despite the diagnosis, Kiaana was determined not to give up and used the knowledge of her condition to empower her, and stand up and be seen and seek support and encouragement from people near and far. Kiaana is inspirational and shares her triumphs and challenges on her social media and loves to read responses of encouragement and love from her family, friends and followers.
In recent years, Kiaana has had two major sudden downturns that threatened to devastate as Alicia pushed for the hospital interventions, disability supports and care that Kiaana needed.
Kiaana was hospitalised over Easter 2020, after what at first looked like a panic attack that sent her into 4 days of delirium, temperature spikes and dystonic storms, just as the Covid 19 pandemic first hit South Australia. The hospital experience was so traumatising, during the first pandemic restrictions, that Kiaana deteriorated rapidly in hospital and suddenly it was looking like there was no coming back. Alicia was in shock having to answer questions like if she wanted her daughter to be resuscitated when just days before she was laughing, walking, talking, and eating with minimal assistance.
The cheerful, determined, go-getter that everyone knew so well, was now confined to a hospital bed, screaming at every intervention and the sound of every footstep, hugging her toy horse tightly, saying "home, home" over and over. This was a huge learning curve for all involved, and after a few med changes, Alicia knew she had to take Kiaana home, even though specialists at the hospital were in disagreement as to whether she should stay or go.
Home proved to be the best move for Kiaana, and the months that followed, saw Kiaana go from being curled up riddled with spasticity and anxiety, bed and wheelchair bound, to gradually regaining her strength, her tenacity, and her incredible sense of humour, and surprising everyone day by day, as she pushed through her physical and internal barriers and bit by bit, got back on her feet again and went through a miraculous recovery.
Unfortunately, in the 2 years that followed, Kiaana began to have seizures again (after 3 years prior seizure free). In Sep of 2022, the night before her twin nephews were born, Kiaana stood at the family dinner table and hugged everyone, wishing her sister well with the C-section booked for the next day. Her sister went into hospital in the morning to give birth by Caesar, and that night, Kiaana was rushed to emergency with status epilepticus, (recurrent seizures one after the other without recovery in between). Kiaana had 11 seizures before the ambulance had even left her home. Kiaana was intubated and put in an induced coma, for 4 days, while the doctors worked to get the seizures under control. At age 27, with a diagnoses of Juvenile Batten Disease, having been given a prognosis of late teens to early 20s, Alicia had a hard time trying to convince the doctors that Kiaana's life was nothing like what they seemed to be suggesting, but they couldn't see while she was under sedation.
Again, Alicia took the medical intervention required, including having a PEG (Gastrostomy/Gtube) put in, to support her recovery after intubation and then took Kiaana home as soon as the seizures were under control. With the introduction of lots of new seizure meds, Kiaana has not recovered quite as well as she did the previous time, often sedated much more than Alicia would like her to be. But even still, Kiaana's determination and tenacity shone through and with the dedicated loving support of her family and support team, she has gone from strength to strength, regained her ability to eat by mouth 95% of the time, and at 28 is still standing and weight bearing and taking steps in Mums arms, and Kiaana is still celebrated in her local community, for getting up on the dance floor at a Saturday night music gig, when the music takes control.
Despite the bleak outlook in the midst of the health crisis, Kiaana has made amazing and significant recovery each time, sometimes regaining back skills even weeks and months later that some may have thought to have been lost forever.
Alicia admits that with Batten Disease, there is expectation for loss over time, however she says that it’s so important to her and her family that Kiaana reaches her potential and is given every chance to have the best quality of life possible. This has meant ensuring the right equipment and supports at home.
Despite Kiaana's recoveries, Alicia has had to take Kiaana's NDIS plan to external review, because in late 2020, Kiaana was issued an inappropriate and under-funded plan, and simply something that was unacceptable to Alicia, for someone as amazing and determined as Kiaana is. It has taken 3 years, but due to that tenacity that Kiaana clearly gets from her Mum, they have have had some big wins through the AAT process and the NDIA has finally agreed to meet many of the disability support needs that Alicia has been advocating relentlessly for Kiaana to have access to.
As well as an increase in capacity building & therapy budget and an increase in 2-1 supports, to enable Kiaana to keep on her feet and keep moving, in her SDA home and community, NDIA have finally approved some much needed assistive technology. Second Skin for postural support, Motomed (exercise bike) that Kiaana can use while still seated in her wheelchair, an Oxford Journey stand-aid which is nicknamed ‘Oxi’ and a mobile hoist "Mo" with an ambulating sling that they call "Tetley". Kiaana stands every morning with the support of "Oxi" and "Uncle Larry Lazy Legs" (an under leg sling that she can sit down in if she needs to) to 2 songs, "Stand By Me" and Elton John's "I'm Still Standing", before sitting down for a peddle on the motomed, or a walk around the house, or sometimes around the block, in "Mo & Tetley". These crucial supports provide Kiaana and her support team with the opportunity to keep Kiaana safely standing, moving, walking, dancing and laughing.
If you have an affected child or young person and this story raises questions or areas of need for resources or support, please contact Liz Sanson, Family Support Coordinator for BDSRA Australia.
(left) Standing with Oxi and Uncle Larry Lazy LongLegs (right) Working out on the pilates reformer
(left) Peddling on the motomed (right) Dancing with sister Shani, while standing in the Permobile Corpus F5
Kiaana with her mum and sisters
(left to right) Shani, Alicia, Kiaana and Jaidene
Kiaana with her twin nephews