This is a short story about my sister, Anwen. At the age of 19 Anwen was diagnosed with a rare dystrophy that has gradually taken the use of many muscles and continues to do so (https://www.jain-foundation.org/patient-physician-resources/learning-center/faq-lgmd2bmiyoshidysferlinopathy). The little things we all take for granted, like walking to the fridge, or driving to the shop, are an immense undertaking for Anwen, who is now transitioning from crutches to a wheelchair.
Things have changed for Anwen in recent times. A talented artist, Anwen enjoyed early success in a career that has now been laid aside due to loss of strength in her arms and legs. Never one to take adversity lying down, she is currently pursuing a law degree, with the intention of becoming an advocate for people with disability (refer to the article attached in our updates). She was also recently elected to the board of the Disability Services Commission. These endeavours exemplify Anwen’s strong will, tenacity, and desire to effect change for people who need someone in their corner.
Anwen is doing this from the coastal town of Denmark, Western Australia. This provides her daughter, Alba, with an enviable outdoor lifestyle for an 8 year old. Alba has an array of cuts and bruises to prove her love of the great outdoors. Anwen would of course dearly love to go to the beach, hike and generally spend time outdoors with Alba. Alba’s wish for this to be possible is evidenced in numerous letters to the fairies.
We have looked into the various options that would allow Anwen to access and enjoy the environment in and around Denmark. Acknowledging that a standard powered wheelchair would further rule out outdoor recreation, our research has led us to the Ogo; an all-terrain wheelchair that would eliminate many of the access issues that Anwen currently faces
We would all love Anwen to be able to access an Ogo while Alba is still young and enthusiastic, and not prioritising her Instagram feed over actual childhood experiences. It will also mean that Alba’s wish to be outdoors and active with her mum becomes a reality.
We would all love to change Anwen’s life for the better, and her immediate family have all made contributions towards the purchase cost of an Ogo (which will be over $20,000). We hope that a chair can be purchased in February, and Anwen and Alba can be outdoors together sooner rather than later.
We hope that friends and family, and maybe complete strangers, would like to make a contribution to the cost of the Ogo. While other funding avenues are being pursued (including grants for people with disability), any contribution would be sincerely appreciated.
If we happen to raise funds beyond the cost of the Ogo, the additional funds will be donated to Professor Sue Fletcher’s team at the Murdoch Institute of Technology. Sue’s team are conducting research into the treatment of muscular dystrophy, with Anwen’s muscle cells currently being used to test gene therapies. For more information please visit: http://profiles.murdoch.edu.au/myprofile/sue-fletcher/.
As is the way, we are also offering a prize; one of Anwen’s artworks, personally chosen by me,
for one lucky, randomly selected contributor. You know it’s worth it.
Thank you for reading.
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