Can you help these Duchenne brothers out?
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Can you help these brothers out and help us fund a wheelchair modifiable van? For our amazing friends who already know us thank you for reading this. For those who don’t know our story, below is a bit about our 2 amazing boys and why we are crowd funding. Bailey and Oakley both have a genetic, degenerative neuromuscular condition known as Duchenne Muscular Dystrophy. The short version of this is that they go from being vibrant, energetic young boys to requiring a full-time powered wheelchair by 11-13 years of age due to the progressive muscle waste for which there is currently no known cure. Their life expectancy is also drastically reduced (we actively chose NOT to put a number on this!) but we are super hopeful a cure will be found soon.
Bailey’s first powered wheelchair is due to arrive in the coming months and we are asking for support from anyone out there who may be able to help us reach our goal so we can help provide our boys with a wheelchair accessible vehicle so they can have a normal, fun filled child hood.
Our boy Bailey is 13 years old and had a phenomenally late diagnosis at 10 and 9 months old. This has given us little time to prepare for overwhelming financial challenges ahead. He never lets his condition get him down and loves being out and about, seeing the world, nature, fishing and catching up with friends. He attends a great many social events with our local WA Muscular Dystrophy association and is always looking for new ways to join in and get involved. He is very keen to engage in wheelchair sports so he can be part of a team and would love nothing more then to find new ways of exploring the world in his new chair. He is falling regularly and we have just learnt there is no possibility of getting him onto the local wheelchair accessible school bus due to a lengthy wait for a spot to become available. Our only option at this stage is to manually lift him from the car and into his chair which will need to be kept at school.
Oakley is 6 and was only diagnosed due to Bailey’s diagnosis and the genetic nature of the condition. He is a highly energetic boy who is very sociable and keen to join in EVERYTHING! He is just starting to need a small amount of physical assistance getting around but in the coming years will have a mobility scooter to help him keep up with his peers. He is a pure joy to be around with a highly infectious grin!
We have 5 children in total and are a very busy household. Prior to our diagnosis I worked full time and Amanda had just commenced her dream of studying to become a midwife. A massive challenge, but we are dedicated and optimistic. Two weeks into her degree we received the crushing Duchenne diagnosis of our boys and our hearts imploded. But we dusted ourselves off, put our game faces on and got straight to work on our new normal and pursuing new dreams and goals for our boys.
Life looks a bit different now. Due to the boys increasing needs I have started a small business and taken on the role of full-time carer while Amanda pursues her studies. We thought we had a bit more time to save before being in this situation but Bailey recently had a substantial fall and injured his knee, and suddenly it is quite clear that he has begun the process of permanently coming off his feet. We had hoped to be a bit more financially able to pursue a vehicle for his growing needs but have found ourselves in a situation where we could use some help getting there, unfortunately the business is on hold during the current pandemic. We have also been advised that the wheelchair accessible school bus service Bailey was going to use is full and he will need to go on the waitlist. This means he will not be able to get to school in his powerchair, which is devastating for him as he so loves catching up with his friends and accessing his hydrotherapy. So we are reaching out! We aim make it as much fun as possible and hope that after the current COVID 19 situation resolves we can start to plan and host some fundraising events to reconnect with our close friends, old and new and raise much needed funds. PLEASE SHARE FAR AND WIDE and feel free to drop us a message, we love a chat and would love to raise awareness of Duchenne Muscular Dystrophy.
Warmest regards,
Michael and Amanda, and our Duchenne warriors, Bailey and Oakley.
Bailey’s first powered wheelchair is due to arrive in the coming months and we are asking for support from anyone out there who may be able to help us reach our goal so we can help provide our boys with a wheelchair accessible vehicle so they can have a normal, fun filled child hood.
Our boy Bailey is 13 years old and had a phenomenally late diagnosis at 10 and 9 months old. This has given us little time to prepare for overwhelming financial challenges ahead. He never lets his condition get him down and loves being out and about, seeing the world, nature, fishing and catching up with friends. He attends a great many social events with our local WA Muscular Dystrophy association and is always looking for new ways to join in and get involved. He is very keen to engage in wheelchair sports so he can be part of a team and would love nothing more then to find new ways of exploring the world in his new chair. He is falling regularly and we have just learnt there is no possibility of getting him onto the local wheelchair accessible school bus due to a lengthy wait for a spot to become available. Our only option at this stage is to manually lift him from the car and into his chair which will need to be kept at school.
Oakley is 6 and was only diagnosed due to Bailey’s diagnosis and the genetic nature of the condition. He is a highly energetic boy who is very sociable and keen to join in EVERYTHING! He is just starting to need a small amount of physical assistance getting around but in the coming years will have a mobility scooter to help him keep up with his peers. He is a pure joy to be around with a highly infectious grin!
We have 5 children in total and are a very busy household. Prior to our diagnosis I worked full time and Amanda had just commenced her dream of studying to become a midwife. A massive challenge, but we are dedicated and optimistic. Two weeks into her degree we received the crushing Duchenne diagnosis of our boys and our hearts imploded. But we dusted ourselves off, put our game faces on and got straight to work on our new normal and pursuing new dreams and goals for our boys.
Life looks a bit different now. Due to the boys increasing needs I have started a small business and taken on the role of full-time carer while Amanda pursues her studies. We thought we had a bit more time to save before being in this situation but Bailey recently had a substantial fall and injured his knee, and suddenly it is quite clear that he has begun the process of permanently coming off his feet. We had hoped to be a bit more financially able to pursue a vehicle for his growing needs but have found ourselves in a situation where we could use some help getting there, unfortunately the business is on hold during the current pandemic. We have also been advised that the wheelchair accessible school bus service Bailey was going to use is full and he will need to go on the waitlist. This means he will not be able to get to school in his powerchair, which is devastating for him as he so loves catching up with his friends and accessing his hydrotherapy. So we are reaching out! We aim make it as much fun as possible and hope that after the current COVID 19 situation resolves we can start to plan and host some fundraising events to reconnect with our close friends, old and new and raise much needed funds. PLEASE SHARE FAR AND WIDE and feel free to drop us a message, we love a chat and would love to raise awareness of Duchenne Muscular Dystrophy.
Warmest regards,
Michael and Amanda, and our Duchenne warriors, Bailey and Oakley.
Organizer
Michael Atkinson
Organizer
Butler WA
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