PLEASE SUPPORT OUR 2022 TAX APPEAL - READ HOW YOUR DONATION WILL CHANGE LIVES
A young girls looks at the camera and smiles

Winnie’s amazing journey

Like many little girls, three-year-old Winnie loves barbie dolls, going to kindy and playing with her sister, Eden (5). However, these are milestones her family didn’t expect her to reach after she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at four-months-of-age.

“When we first received the news, we were told Winnie’s life expectancy was short and that we would be lucky to see her sit up. With no strength to lift her arms or grab toys, I remember thinking if she would ever be able to play with her older sister,” Mum Lucy recalls.

Since the initial diagnosis, Winnie has received support from Montrose – a leading therapy provider for Children with SMA in Queensland.

Lucy explains: “At first Winnie was treated with Spinraza which involves a lumbar puncture injection every four months. When Winnie was 15-months-old we received a government grant for a one-time treatment called Zolgensma and since receiving it our outlook has completely changed.

“Previously, I didn’t think about the future because I was just focused on getting to the next milestone. Now she has had Zolgensma we can see the gains she has made with her strength and physiotherapy.” 

Montrose Physiotherapist Isabella has been working with Winnie since she was six-months-old. During that time, she has seen Winnie develop strength, confidence and independence.

Montrose client Winnie standing with assistance from Montrose Physio Isabella

“Management of SMA is a developing research area. The medical therapies Winnie and other children with SMA are accessing are relatively new, so physiotherapy is really important for monitoring Winnie’s function.

In this session, Winnie practices supported standing in a play-based grocery shopping activity. This engages the upper limbs as she reaches for toys and engages in play. She then completes a weight shifting activity, shifting her weight with support across the surface to take the food back to the farm animals. Winnie is working on walking and stability in standing and weight bearing without even realising it!

“We are currently working on our gross motor goals of kneeling, standing and walking as well as transfers so that she can safely access her everyday environment. These skills involve multiple muscle groups, and adequate postural stability and balance. We have been celebrating Winnie’s achievements as she progresses.

“It is important to monitor her comfort throughout the session, including fatigue, to ensure that we make progress safely,” Isabella explains.

At Winnie’s age, therapy is all about play while carefully practicing physical movement and gross motor skills. Through a series of age-appropriate activities Isabella ensures Winnie works on her ability to stand, walk and kneel.

Isabella says Play based therapy focuses on activities that interest the child, so that the tasks we practice are engaging. First and foremost, play based therapy is really motivating – it makes therapy fun as children get to explore different skills and be imaginative with their play which is also beneficial for their cognitive development”.

As a result of regular physiotherapy at Montrose, Winnie is crawling, standing and now walking with assistance. 

“I don’t think this would have been possible without the right guidance and support. Isabella is very flexible in her approach to therapy and always has creative new ways to motivate Winnie to work towards her goals,” said Lucy.

Isabella said: “I think for children that are small like Winnie, tapping into their interests and letting them take ownership of the session is important for them to feel like they are working together with the therapist, rather than directly receiving therapy.

 

Along with weekly Physiotherapy and regular hydrotherapy, Winnie also sees a Montrose Occupational Therapist who has supported her equipment needs. 

“We recently applied for our car to be modified for Winnie’s new wheelchairs and both therapists were able to come to the trial together and look at what we needed from an OT and Physio perspective.

During the trial Isabella considered Winnie’s postural support and ability to safely access the vehicle while the Occupational therapist looked at the transfer of equipment as well as access to Winnie’s car seat.

The Occupational Therapist was then able to liaise with providers to identify the most suitable modifications and collaborate with the family to ensure the choice was family-centred.

The relationships the family has built at Montrose have been a constant support on Winnie’s journey.

“Isabella is the person we see every week, if not twice a week. She has been right there with us on our journey from sitting, to crawling and now walking. I am so grateful to have someone who is invested in Winnie’s health.

Despite the watch and wait nature of the gene therapy, Winnie’s family feel positive about the future knowing that Montrose will be there to support them through significant life transitions.

“Given the progress she has made in such a short amount of time we are optimistic for the future and have even planned a school for Winnie!” Lucy said.

Little girl sits on green exercise ball next to Montrose Physio Isabella

“The hospital will always be the first point of direction when it comes to Winnie’s health but the second place I go to for guidance and support is Montrose,” Lucy concludes.

Physiotherapy from Montrose

 

Montrose Physiotherapists are experienced in working with children and young adults with complex conditions and physical disabilities to improve mobility and increase participation in everyday life. All of our therapists are paediatric experienced and will follow a play-based approach to make sessions fun and engaging.

We currently have immediate Physiotherapy availability across most Centres. We also have immediate OT availability at multiple centres across South East Queensland for clients who require multidisciplinary support. If you have recently recieved a diagnosis or you are looking for a new therapy team, call our team on 1800 193 362 to discuss your needs and how our Physiotherapy team can help.

Find out more about Montrose Physiotherapy services here.

TeleTherapy

You can access Montrose Physio, OT and Speech Pathology using TeleTherapy

Find Out More

Can We Help?

Talk to one of our friendly support staff on:

1800 193 362

Or visit one of our Queensland support centres

View Centre Locations