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A three year old girl is smiling. Her name is Isla.

An amazing  journey for Isla

We first introduced you to Isla when she was 6 months old. At that time, she had just been diagnosed with Spinal Muscular Atrophy (SMA) – Type 1 and was waiting for NDIS funding.

The Montrose Sunshine Coast team lent equipment, advised the family through their NDIS application, and provided initial therapy sessions at no cost to the family.

Well look at Isla now! She is now turning 3 and getting ready to start Kindy. But it’s been quite a journey so far for this young girl and her family.

A montrose therapist is looking at a young girl. She is laughing.

Early intervention with SMA is vital. It’s a rare genetic disease caused by a mutation in the survival motor neuron gene and usually leads to paralysis and breathing difficulties. Until recently, children diagnosed with SMA Type 1 rarely lived past their second birthday.

However new gene therapy treatment has offered hope of a much better outcome for children like Isla.

Mum, Emma explains: “In 2020, Isla was approved for gene therapy treatment though the Medical Treatment Overseas Program. We should have been going to Chicago to have that treatment but due to COVID, this couldn’t happen!”

“Thankfully, they flew it to Sydney for us and in May last year she had her infusion of Zolgensma. It’s a one-time treatment and since having it, we have definitely seen improvements in her strength and in what she’s able to do which has been really exciting.”

Our photos were taken during a session with Physiotherapist Amanda. At Isla’s age, therapy is all about play while carefully practicing physical movement and gross motor skills. Amanda ensures that Isla works at kneeling, standing and crawling. Isla, meanwhile, is demanding to know what the next game is before finally admitting she is tired as the session finishes!

Getting therapy as early as possible can help reduce the impact of SMA by maximising strength while limiting development of contractures (permanent shortening of muscles leading to deformity). Montrose is one of the leading providers of therapy for children with SMA in Queensland.

With Montrose, Isla has weekly Physiotherapy and has also had regular hydrotherapy. She also sees Montrose Occupational Therapist, Kacey.

“She’s doing amazingly and we’re actually getting ready for a day of pre-kindy from July this year. Through Montrose she’s trialled a few pieces of equipment that will hopefully help her with her Kindy transition.”

young girl smiling at the camera.

Isla at 6 months when we first featured her story. From the start, Montrose has provided loan equipment including the special chair (called a Tumble Form).

Emma explains: “Kacey has recently come out to do a major assessment at Kindy to identify any extra modifications needing to be done to make it wheelchair friendly for Isla and to make it work for her. Kacey has done a comprehensive report that the school are happy with to support applications for equipment at the school.”

While this is all very exciting, the wait and watch nature of the gene therapy and getting ready for big transitions is certainly a challenge for the whole family. “It’s a mixed bag of emotions for me at the moment!” says Emma.

The support from Montrose is an important constant in Isla’s life. “Her weekly sessions have been so important. It is great to watch her physio Amanda use creative ideas for exercise that we can then apply into our own daily routines. We’ve seen so much progress. Isla has never been able to crawl, but now she is able to do over ten crawl movements to get to me! We can tell that this is from all of her exercises that she has been doing. Progress like this is so exciting to see.” says Emma.

“It’s also been so helpful to get the Montrose loan equipment to try and see what works for Isla. We’ve been extremely happy with everything that Montrose has done for us.” she concludes.

Therapy Support is available at our Centres across South East Queensland.

young girl and a Montrose therapist plaing a game. They are both laughing.