Help Joeanne get an accessible van
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Hey everyone,
My name is Farah, I am 25 and currently live in Wollongong. I’ve grown up in Fairy Meadow with my younger brother Zak and my mum Joeanne. At the age of 17 I lost my brother Zak to Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is a rare genetic neuromuscular disorder that deteriorates muscles and currently has no cure. When Zak was 11 months old he was diagnosed, he was in his first wheelchair at 6 years old and passed at 16 years old. Unbeknown to my mum at the time she was also affected by Duchenne Muscular Dystrophy.
In the early stages of Duchenne Muscular Dystrophy it affects the muscles in the arms, legs and trunk by causing muscle weakness and by the late stages the heart and respiratory muscles are affected.
This story however, is not about Zak, it is about my mum Joeanne. My mum dedicated her life to Zak and I, which meant putting herself last all the time. It was during this time my mum started to notice muscle pain, which, being a busy mum with a son reliant on a wheelchair she put down to just a normal ache and didn’t think much about it. After years of pain and doctors telling her to take pain relief, or to lose weight because that is what is causing the pain, she decided to see a neurologist. In 2014, after various tests the neurologist managed to join the links, and mum was diagnosed with Manifesting Carrier of Duchenne Muscular Dystrophy. The symptoms of Manifesting Carrier of Duchenne Muscular Dystrophy can be mild right through to severe muscular dystrophy. Since being diagnosed mum has gone from using a walking frame to now a motorised wheelchair. This has impacted mum immensely as she now has no access to the community due to not being able to get around in her car like she used to. As most of you would understand you cannot fit a motorised wheelchair in your average car, you need a car with special modifications to fit the wheelchair. To purchase a vehicle pre modifications we are looking at over $45,000 (and that is second hand)! Mum is on the disability pension, living in specially modified disabled housing and simply cannot afford this cost! We have been in contact with the NDIS and they also are unable to help with the cost of purchasing a vehicle. Mum loves driving and I want her to be able to make the most of it while she can! This would help mum immensely and give her the confidence boost she needs. I'm hoping we can make this a reality!
So this is where you come in. If you could please donate or help in anyway to our cause it would be greatly appreciated. We can't do this alone!
Thankyou so much for your support,
Farah
My name is Farah, I am 25 and currently live in Wollongong. I’ve grown up in Fairy Meadow with my younger brother Zak and my mum Joeanne. At the age of 17 I lost my brother Zak to Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is a rare genetic neuromuscular disorder that deteriorates muscles and currently has no cure. When Zak was 11 months old he was diagnosed, he was in his first wheelchair at 6 years old and passed at 16 years old. Unbeknown to my mum at the time she was also affected by Duchenne Muscular Dystrophy.
In the early stages of Duchenne Muscular Dystrophy it affects the muscles in the arms, legs and trunk by causing muscle weakness and by the late stages the heart and respiratory muscles are affected.
This story however, is not about Zak, it is about my mum Joeanne. My mum dedicated her life to Zak and I, which meant putting herself last all the time. It was during this time my mum started to notice muscle pain, which, being a busy mum with a son reliant on a wheelchair she put down to just a normal ache and didn’t think much about it. After years of pain and doctors telling her to take pain relief, or to lose weight because that is what is causing the pain, she decided to see a neurologist. In 2014, after various tests the neurologist managed to join the links, and mum was diagnosed with Manifesting Carrier of Duchenne Muscular Dystrophy. The symptoms of Manifesting Carrier of Duchenne Muscular Dystrophy can be mild right through to severe muscular dystrophy. Since being diagnosed mum has gone from using a walking frame to now a motorised wheelchair. This has impacted mum immensely as she now has no access to the community due to not being able to get around in her car like she used to. As most of you would understand you cannot fit a motorised wheelchair in your average car, you need a car with special modifications to fit the wheelchair. To purchase a vehicle pre modifications we are looking at over $45,000 (and that is second hand)! Mum is on the disability pension, living in specially modified disabled housing and simply cannot afford this cost! We have been in contact with the NDIS and they also are unable to help with the cost of purchasing a vehicle. Mum loves driving and I want her to be able to make the most of it while she can! This would help mum immensely and give her the confidence boost she needs. I'm hoping we can make this a reality!
So this is where you come in. If you could please donate or help in anyway to our cause it would be greatly appreciated. We can't do this alone!
Thankyou so much for your support,
Farah
Organizer
Farah Ghizlane Touilii
Organizer
Tarrawanna NSW
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