Fifteen-year old Marianne has leukodystrophy and uses a manual reclining wheelchair which is very difficult to manoeuvre in places like cinemas or restaurants, so it is hard for her family to do things together outside the house.
One of the activities they are able to do and really enjoy is going fishing near their home in south-western Sydney. Marianne’s parents and two younger brothers all have rods, but they wanted to give Marianne one as well so that she felt more part of things and had something to do.
Marianne’s therapist suggested that her parents contact TAD, and our assessment staff thought that an umbrella holder designed for golf buggies would fit the bill. Volunteer Neil designed a clamp for mounting the holder on Marianne’s wheelchair using wingnuts, which can be loosened to turn it out of the way if required.
The holder is just right for a fishing rod, and also has the added benefit of being suitable for an umbrella. Marianne’s mother Maria says that this has been most convenient when they are out fishing and it starts to rain, as they can quickly swap Marianne’s rod for an umbrella and keep her from getting wet.
Maria says that the holder is only a little thing, but it has made a big difference to the quality of life of the whole family. It gives them a little bit of extra freedom to get out of the house and bond as a family through a shared activity.
The family tries to give Marianne as many experiences as possible, despite her limited mobility. They have bought a small commuter bus to transport her, and recently went on a family trip to the Snowy Mountains, where she was the only person in the snow in a wheelchair!
Another highlight for Marianne was meeting singer Britney Spears, courtesy of the Starlight Foundation. She was taken in a limousine to Fox Studios to meet Britney personally, and then saw her concert from a prime position.