Help Keep Mitch off the sideline
Donation protected
Mitch is a funny, intelligent, quick witted 8yr old boy who needs your help to gain independence as well as having the chance to be the little soccer star he wants to be.
Hi I'm Rachael, Mitch’s Mum. Mitch suffers from a form of Muscular Dystrophy called FSHD . This terrible disease is robbing him of many childhood experiences and is progressing faster than we could have ever imagined. Taking his abilities away bit by bit, affecting so many muscle groups in his body such as facial, neck, back, abdominal, hips, legs and arms.
Diagnosed at 16mths, little floppy but appeared a “normal” little boy.
At 2 he would run down the hall dressed as his favorite character.
At 3 riding his scooter.
At 4, slowing down a little he played preschool soccer and rode his bike.
At 5 started school still walking, he was slower than the other kids but could still walk short distances. So we borrowed a wheelchair from the Children’s Hospital for use at school only to help him get across the playground when he tired.
At 6 he was no longer able to walk and confined to his wheelchair. I can’t tell you as a parent how hard it is to watch all the kids grow stronger and become more independent, while Mitchell grows weaker and is more dependent.
Now at 8 he is becoming more aware of the things he can’t do. I have heard him say “dam you legs”, “I will swap my chair for their legs” or the worst one “why does everything happen to me”.
The progression of this disease has not only come as a big shock especially in the last two years but also at a big cost. With Mitchell now being fulltime in a wheelchair we have had to buy a new house and modify it with an accessible bathroom. We put in a pool to assist with his exercise to manage and maintain his weight. The weightlessness in the water means he can exercise for hours, moving independently without "help" from anyone. We also needed new transport to accommodate Mitchell in his chair, which meant new car and converting it. These were expenses we really weren't ready for.
And now we have gotten to the point where his current chair is too small, which in turn becomes dangerous as it could tip easily. His feet fall off the front of the foot plate, twisting his ankle on a few occasions. Unfortunately his wheelchair is now his permanent "legs" and it’s not keeping up with his daily activity and going the distance. It was only meant to be used for a couple of hours at school each day, not all day long. Therefore outings are limited, as the battery life is failing, even with new batteries his current chair is not lasting more than two to three hours which means he often misses out on activities with friends after school or outings to places like the Zoo are near impossible. The current wheelchair is second hand and has now run its course.
This is where my husband Marcel and I need your help.
A new chair will give him greater independence and confidence, one that allows him to stand and to be included in all activities, whilst allowing him to maintain muscle and bone strength in his legs. It will also allow him to lie down and do his own daily stretches, as he gets sore from sitting in the one position. A chair such as this comes at a cost of 46k! We are very lucky to have had Enable and Variety assist towards this chair but we are still short $13k for rst of chair and car alterations.
Furthermore when he gets this new chair he will no longer be able to play wheelchair soccer, his passion for the last couple of years. As the new chair is built for daily needs and not soccer. Playing soccer in this new chair could damage the mechanics for standing, reclining, elevating etc. This means he gains greater independence with day to day activities but his soccer “legs” are taken away from him.
We really want to look at getting him a sports wheelchair for soccer, unfortunately you can only purchased these from the U.S., the chair combined with shipping and our Auzzie dollar means we are looking at $16K plus. He loves his soccer, he is part of a team with kids just like him and he is good at it. NSW Powerchair Football Association have seen his potential and asked him to move from Juniors to Division Two to play with the big boys. His eyes welled up when we told him he can’t play in his new chair; this was so hard to say after last year he told us "soccer is my life". We don’t want his wheelchair to be the reason why he is being robbed of any more experiences, as he already sits on the sideline for too many things.
This is difficult for Marcel and me to ask for your help, as all our fundraisers have been for Charity, FSHD and MDNSW . But it’s more difficult to see Mitch struggle and miss out, so we need you to help us, to help Mitch. Any help at this point towards the cost of his wheelchairs would be greatly appreciated and would mean that Mitchell will have greater independence in daily life without having to give up his love of soccer.
Thanking you in advance, we appreciate any assistance you can offer.
Rachael and Marcel
Hi I'm Rachael, Mitch’s Mum. Mitch suffers from a form of Muscular Dystrophy called FSHD . This terrible disease is robbing him of many childhood experiences and is progressing faster than we could have ever imagined. Taking his abilities away bit by bit, affecting so many muscle groups in his body such as facial, neck, back, abdominal, hips, legs and arms.
Diagnosed at 16mths, little floppy but appeared a “normal” little boy.
At 2 he would run down the hall dressed as his favorite character.
At 3 riding his scooter.
At 4, slowing down a little he played preschool soccer and rode his bike.
At 5 started school still walking, he was slower than the other kids but could still walk short distances. So we borrowed a wheelchair from the Children’s Hospital for use at school only to help him get across the playground when he tired.At 6 he was no longer able to walk and confined to his wheelchair. I can’t tell you as a parent how hard it is to watch all the kids grow stronger and become more independent, while Mitchell grows weaker and is more dependent.
Now at 8 he is becoming more aware of the things he can’t do. I have heard him say “dam you legs”, “I will swap my chair for their legs” or the worst one “why does everything happen to me”.
The progression of this disease has not only come as a big shock especially in the last two years but also at a big cost. With Mitchell now being fulltime in a wheelchair we have had to buy a new house and modify it with an accessible bathroom. We put in a pool to assist with his exercise to manage and maintain his weight. The weightlessness in the water means he can exercise for hours, moving independently without "help" from anyone. We also needed new transport to accommodate Mitchell in his chair, which meant new car and converting it. These were expenses we really weren't ready for.
And now we have gotten to the point where his current chair is too small, which in turn becomes dangerous as it could tip easily. His feet fall off the front of the foot plate, twisting his ankle on a few occasions. Unfortunately his wheelchair is now his permanent "legs" and it’s not keeping up with his daily activity and going the distance. It was only meant to be used for a couple of hours at school each day, not all day long. Therefore outings are limited, as the battery life is failing, even with new batteries his current chair is not lasting more than two to three hours which means he often misses out on activities with friends after school or outings to places like the Zoo are near impossible. The current wheelchair is second hand and has now run its course.
This is where my husband Marcel and I need your help.
A new chair will give him greater independence and confidence, one that allows him to stand and to be included in all activities, whilst allowing him to maintain muscle and bone strength in his legs. It will also allow him to lie down and do his own daily stretches, as he gets sore from sitting in the one position. A chair such as this comes at a cost of 46k! We are very lucky to have had Enable and Variety assist towards this chair but we are still short $13k for rst of chair and car alterations.
Furthermore when he gets this new chair he will no longer be able to play wheelchair soccer, his passion for the last couple of years. As the new chair is built for daily needs and not soccer. Playing soccer in this new chair could damage the mechanics for standing, reclining, elevating etc. This means he gains greater independence with day to day activities but his soccer “legs” are taken away from him.
We really want to look at getting him a sports wheelchair for soccer, unfortunately you can only purchased these from the U.S., the chair combined with shipping and our Auzzie dollar means we are looking at $16K plus. He loves his soccer, he is part of a team with kids just like him and he is good at it. NSW Powerchair Football Association have seen his potential and asked him to move from Juniors to Division Two to play with the big boys. His eyes welled up when we told him he can’t play in his new chair; this was so hard to say after last year he told us "soccer is my life". We don’t want his wheelchair to be the reason why he is being robbed of any more experiences, as he already sits on the sideline for too many things.
This is difficult for Marcel and me to ask for your help, as all our fundraisers have been for Charity, FSHD and MDNSW . But it’s more difficult to see Mitch struggle and miss out, so we need you to help us, to help Mitch. Any help at this point towards the cost of his wheelchairs would be greatly appreciated and would mean that Mitchell will have greater independence in daily life without having to give up his love of soccer.
Thanking you in advance, we appreciate any assistance you can offer.
Rachael and Marcel
Organizer
Rachael Albert
Organizer
Taren Point NSW
