Two years passed before Hindmarsh Island teenager Maiah McWaters received a diagnosis which would change the course of her and her family’s life.
She was diagnosed with Batten Disease at 14-years-old, an extremely rare neurological degenerative disorder which includes vision loss, seizures and childhood dementia.
Tragically, the disease is also terminal, with the family told a heart-breaking life expectancy is around 22 years old.
“I think we knew,” her mum Mandy said.
“It hits you hard and you get upset.”
The family were dealt a second severe blow, when Maiah’s younger sister, Kenzlie, received the same diagnosis in 2020.
The sisters are now two of three South Australian cases in South Australia and among 50 in Australia.
Over Christmas, Maiah’s condition went downhill when she spent 41 days in hospital and had five seizures on Christmas Day and “deteriorated a lot over that time”.
Maiah, 20, is now blind, has seizures and has lost mobility, while Kenzlie, 9, has begun losing her vision.
“Maiah can remember things from when she was little, she will watch the same movies now to what she watched when she was younger and she can say the lines word-for-word, but try asking her what she did 20 minutes ago and she can’t tell you,” Mandy explained.
“Maiah has struggles every day, but she’s happy – she loves her singing and her movies, and that’s the main thing.”
Parents Mandy and David have an unwavering love and care for their daughters and are dedicated to brightening their girls’ lives.
“We just kept living the way we were to keep the girls happy and to not disrupt them,” Mandy said.
“As long as they’re happy, we’re happy.
“Whatever is going on in our life, we’ve got to make sure that they’re well looked after and happy.”
Starlight Children’s Foundation gifted both sisters special trips after their diagnoses, including a Queensland holiday last year.
Dr Ineka Whiteman, the Head of Research at Batten Disease Support and Research Association, helped the girls go to Sea Life where Kenzlie fed penguins and the sisters had their photo taken with seals.
“They weren’t allowed to touch the seals, but they got the seal to turn his head towards Maiah, then they made a signal and the seal actually talked in her ear,” Mandy remembers fondly.
“Because she couldn’t see or touch it, they made it talk in her ear so she knew that it was there.”
Kenzlie attends Victor Harbor Primary School and has a passion for 1st Goolwa Sea Scouts, where she attends regular camps and “has an absolute ball”.
“They have been super supportive,” Mandy said.
“They’re fantastic, they’ll do anything to help Kenzlie achieve anything there.”
1st Goolwa Sea Scouts have further shown their support by organising a fundraiser for Batten Disease Support and Research Association, which supports research and families experiencing the disease.
The association has been “fantastic” and “helpful” in supporting the McWaters family, including by organising an educational visit from Dementia Australia.
The upcoming fundraiser Bounce4Batten will be held at Inflatable World, Morphett Vale, on June 16, with older kids welcome from 5.30pm to 7pm, and younger kids welcome from 7pm to 8.30pm, costing $18 per person.
For tickets and further information, contact Sharon on: (0419 846 167) or email: (101110@sa.scouts.com.au).
