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.

“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.

“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”.

“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.

“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.