As well as Physiotherapy and regular Hydrotherapy, Winnie also sees a Montrose Occupational Therapist. Montrose has recently supported Winnie’s equipment needs, securing her a manual and power wheelchair, and loaning equipment to her kindergarten.
“Winnie is now crawling which we never expected her to do, she’s standing and she’s taking steps! Her progress is better than we could have ever imagined and it would not have been possible without the right guidance and support. It really has been life changing for us!”
Although Winnie has made great progress, her journey hasn’t always been easy. At one stage, her NDIS plan ran out and the family faced ceasing therapy altogether. This is where Montrose stepped in – continuing therapy sessions at no cost to the family.
“Montrose allowed us to continue our weekly sessions as opposed to stopping or being cut down to monthly. This was a lifeline and allowed us to maintain Winnie’s progress” she said.
Isabella said “Children with SMA are at risk of function regression, so it is important to bridge the funding gap so that the family can remain connected with their therapy team and continue working on their goals.”
Despite the watch and wait nature of the gene therapy, Winnie’s family is excited for the future as they know Montrose will be there to support them along the way.
“We never thought we would see school days but now we are looking towards prep and discussing with our Physiotherapist and Occupational Therapist what equipment we will need for school,” she 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.