Charlie's Hope - Wheelchair Accessible Vehicle
Donation protected
I want to start by saying that both Barry and I never ever imagined we would be in this situation of opening up a gofundme page for one of our children, and this decision has not been easy as we are very proud people. We rarely ask for help and always try to do our best, work hard, volunteer our time for so many causes and yet here we are today asking for help.
Our story began almost 2 years ago when we received the most devastating news imaginable. Our healthy, beautiful then 8 year old son Charlie was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a degenerative muscle wastage disease due to the bodies inability to create dystrophin which keeps muscles alive. Therefore the muscles slowly die throughout his body generally starting with the legs, most children are in a wheelchair they say from 10 years of age then moving throughout the body generally leading to heart or lung failure. This disease is 100% fatal, there is no current cure and the only medication Charlie has currently is steroids which have caused dramatic weight gain, stunted growth, mood swings and excessive hair. When I speak to people about Duchenne most people have never heard of it as it effects 1 in 3500 boys and 1 in 50 million girls, and therefore people do not grasp the true ramifications of this disease simply because they do not know. So the way I have been describing this disease is it is similar to Motor Neuron Disease however that effects nerves and generally symptoms appear after the age of 40 and Duchenne effects muscles and diagnosis is generally around 3 or 4 years of age. Prior to the ice bucket challenge not many people knew about Motor Neuron's and that is why I am passionate about raising awareness for Duchenne Muscular Dystrophy. The more people that know the better chances we have of finding a cure and beating this catastrophic disease.
Unfortunately Charlie's mobility has rapidly declined over the last three months, he uses a mobility scooter or manual wheelchair outside of the home as he is unable to walk far. Charlie is unsteady on his feet and always needs to hold onto something otherwise his muscle give way and he collapses to the ground. These collapses are so violent and unexpected it scares everyone in the vicinity and can often result in broken bones - another side effect of steroids and this is how Charlie recently broke 3 of his toes. Therefore we are now in the stages of planning for his future which means a power wheelchair. We are lucky the Australian Government assist with the funding of such a costly purchase however they do not assist with the purchase of an accessible mode of transport only the adaptations of the vehicle. But with that comes stipulations that the vehicle must be practically new in order to last Charlie's shortened lifespan. Financially we are unable to purchase such a vehicle as we also know there will come a day that I will need to give up my full time position to become Charlie's full time carer. Therefore we appreciate any donation you can make to help fund this vehicle.
We will be doing a lot of fundraising over the next six to twelve months but thought this gofundme page will kick start our goal. Please share with family, friends, work colleagues and acquaintances, even if they aren't able to help financially we hope this will raise awareness for Duchenne Muscular Dystrophy.
This disease has taken so much from our son and our family already however we will not let it take our spirit. We look at things differently, we stop and smell the roses, we celebrate the small wins and we treasure each precious memory.
Not finding a cure is not an option, we live in hope every single minute of each day.
Thank you.
Our story began almost 2 years ago when we received the most devastating news imaginable. Our healthy, beautiful then 8 year old son Charlie was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a degenerative muscle wastage disease due to the bodies inability to create dystrophin which keeps muscles alive. Therefore the muscles slowly die throughout his body generally starting with the legs, most children are in a wheelchair they say from 10 years of age then moving throughout the body generally leading to heart or lung failure. This disease is 100% fatal, there is no current cure and the only medication Charlie has currently is steroids which have caused dramatic weight gain, stunted growth, mood swings and excessive hair. When I speak to people about Duchenne most people have never heard of it as it effects 1 in 3500 boys and 1 in 50 million girls, and therefore people do not grasp the true ramifications of this disease simply because they do not know. So the way I have been describing this disease is it is similar to Motor Neuron Disease however that effects nerves and generally symptoms appear after the age of 40 and Duchenne effects muscles and diagnosis is generally around 3 or 4 years of age. Prior to the ice bucket challenge not many people knew about Motor Neuron's and that is why I am passionate about raising awareness for Duchenne Muscular Dystrophy. The more people that know the better chances we have of finding a cure and beating this catastrophic disease.
Unfortunately Charlie's mobility has rapidly declined over the last three months, he uses a mobility scooter or manual wheelchair outside of the home as he is unable to walk far. Charlie is unsteady on his feet and always needs to hold onto something otherwise his muscle give way and he collapses to the ground. These collapses are so violent and unexpected it scares everyone in the vicinity and can often result in broken bones - another side effect of steroids and this is how Charlie recently broke 3 of his toes. Therefore we are now in the stages of planning for his future which means a power wheelchair. We are lucky the Australian Government assist with the funding of such a costly purchase however they do not assist with the purchase of an accessible mode of transport only the adaptations of the vehicle. But with that comes stipulations that the vehicle must be practically new in order to last Charlie's shortened lifespan. Financially we are unable to purchase such a vehicle as we also know there will come a day that I will need to give up my full time position to become Charlie's full time carer. Therefore we appreciate any donation you can make to help fund this vehicle.
We will be doing a lot of fundraising over the next six to twelve months but thought this gofundme page will kick start our goal. Please share with family, friends, work colleagues and acquaintances, even if they aren't able to help financially we hope this will raise awareness for Duchenne Muscular Dystrophy.
This disease has taken so much from our son and our family already however we will not let it take our spirit. We look at things differently, we stop and smell the roses, we celebrate the small wins and we treasure each precious memory.
Not finding a cure is not an option, we live in hope every single minute of each day.
Thank you.
Organizer
Kristy Cunningham Mone
Organizer
Aveley WA