Alleah’s story differs to that of other children with cerebral palsy in that she was not born with the disability.
Mum, Rachelle, had a regular pregnancy until her 30-week scan identified some abnormalities in her unborn baby’s heart. A heart defect was detected, something that was missed at the 20-week scan. The family had to up route their lives from their hometown of Lismore and move to Brisbane immediate so Alleah could be birthed at Royal Brisbane and Women’s Hospital under the care of a specialist medical team.
Nine days after she was born, little Alleah underwent open heart surgery. Although the surgery was a success, the recovery was tough on her tiny body. Alleah was on a bypass machine when she suffered 3 cardiac arrests of between eight to 12 minutes each, followed by a stroke at 16 days old. These episodes had an overwhelming impact on Alleah’s developing brain. Although an MRI at birth was clear, the results were very different after the stroke, and she was eventually marked as high risk for cerebral palsy.
An early diagnosis of cerebral palsy is crucial for families – the earlier children start to receive tailored therapy, the better their outcomes are across their entire lifespan.
Knowing that her brain had been severely impacted, treatment and therapy began almost immediately for Alleah. At just 13 weeks she began physiotherapy and occupational therapy in hospital which continued until she was formally diagnosed with CP. During an early appointment with a private therapist, Alleah’s parents were informed that their daughter may never walk and were told to keep their expectation low. Absolutely determined to achieve the impossible, Alleah and her family had other ideas.
Alleah was referred to Cerebral Palsy Alliance in Alstonville where she received tailored early intervention physiotherapy, occupational and speech therapy, and has never looked back. Against medical odds, Alleah was eight months old when she began to sit unassisted. By 18 months she was crawling, and just before her 3rd birthday, Alleah took her first steps.
“When I met with the Intake Manager at Cerebral Palsy Alliance in Alstonville, she asked what our goals were for Alleah. I told her my goals for daughter are the same as the goals for my son – to reach for the stars. That’s a parent’s hope for any child, isn’t it? I’m not putting a limit on what Alleah can achieve. And the team at Cerebral Palsy Alliance is great with facilitating that. If she wants to try something, we will all just help her do it. They have been instrumental with that,” commented Rachelle, Alleah’s mum.
Nicole Bostin, Alleah’s physiotherapist has worked with Alleah for two years, trialling different equipment and techniques. At the moment they’re working on improving her posture while she’s walking to reduce foot pain. Alleah enjoys hydrotherapy during summer, working on strengthening and swimming skills, and they work on climbing and jumping skills using wall bars, steps and soft play equipment. Play is the important word. Nicole, said:
“Alleah needs support to do these tasks due to her balance difficulties but we all work together and make it fun!”
Together with her big brother and best friend, Hayden, Alleah, now 7 is living her best life and her family are so thrilled with the progress she’s made, thanks to the support of CPA Alstonville. She uses a wheelchair as she can’t walk long distances, yet she loves to climb and dance. Although she is non-verbal, she is animated – her family describing her eyebrows as ‘very expressive’. Alleah is also working with a speech pathologist to develop skills to use game changing eye-gaze technology to assist her with communication.
“Her device is really helping her to engage in play, cause and effect games, say hi, call people over, and communicate her needs. There’s so much potential for Alleah’s future.”