A whole new world for Harrison triplets
When Laidley’s Sandra Harrison was told 23 years ago that she was pregnant with triplets, she thought the doctor was joking.
“I was first told at seven weeks that I was pregnant with twins and I thought I could deal with that. Then at 18 weeks, the doctor said ‘did they tell you about the third one’.”
“It was a bit daunting but you just do what you have to do.”
The triplets – Kayla, Shaye and Gemma – were born six weeks premature and, despite Kayla having two surgeries on a duplex kidney as a baby, Sandra thought her three babies were developmentally on track.
However, Shaye and Gemma – who are identical – still weren’t sitting up at 10 months and an MRI at age two and a half led to a diagnosis of cerebral palsy.
Genetic testing had found that the initial diagnosis was incorrect, and the girls were diagnosed with a rare genetic condition called KIF1a which affects just 141 people in the world and only three in Australia.
The only saving grace was that Shaye and Gemma were diagnosed with a KIF1a mutation which was not degenerative, unlike most other people with KIF1a.
Shaye and Gemma are both in wheelchairs, have scoliosis, intellectual impairment and impaired vision. Gemma also has epilepsy, and seizures every morning when she wakes.
Both have also endured numerous spinal surgeries, with Shaye developing staph in the spine which left her on antibiotics for three years.
Until a year ago, the girls received very limited hours of support per week, with one support worker between them, and Sandra was forced to “beg, grovel and fundraise” to pay for weekly physiotherapy and speech therapy.
A year ago, Shaye and Gemma entered the National Disability Insurance Scheme (NDIS), which gave them significantly more support hours in addition to a support worker each, as well as funding for speech therapy, occupational therapy, physiotherapy, hydrotherapy and music therapy.
The music and speech therapy especially has seen the girls come along in leaps and bounds with a newfound ability to exercise choice and independence from one another.
“Before, they could say five word sentences but a lot of people couldn’t understand them. Now it’s just flowing more and people can now sit and have full conversations with them,” Sandra said.
“Once they started saying yes or no, I could give them a choice and it made the world of difference.”
Sandra said funding for an additional support worker now meant that Shaye and Gemma had their own choices about what they would do day-to-day.
“We used to only have one support worker between the two girls but one person couldn’t push two wheelchairs, so they used to spend a lot of time at home. Now, they can go out into the community and do things. They never had that before, and now their worlds have opened up.”
“I wanted to try and give them their own choices. Just because they’re identical twins doesn’t mean they like exactly the same thing.”
Shaye and Gemma now volunteer one day per week at a local aged care facility where they spend time talking with the residents, helping the staff, and putting on country music concerts with the aid of their music therapist.
They also go for picnics, fishing, sailing once a month with their support workers, on trips to South Bank and have even been away on overnight trips with the local youth centre.
“The NDIS has paid for the youth centre staff to be trained to administer medication if Gemma has a seizure so that she can go on overnight excursions.”
“Shaye was also always too scared to spend a night away from Mum, but now she’s learning that you can go away from home, have a good time, and still come back to your home and your bed. She’s never done all those hings, but now she’s realising she can.”
Sandra said her girls were now able to experience things they never did before. “They have choices now.”
To view the Summer edition of the TOGETHER magazine, click here.
To subscribe to our quarterly magazine, sign up here.