Lucy's Special Pink Power Chair
Donation protected
My lovely son Stuart and his wife Allyson were childhood sweethearts and faced many challenges together, with Allyson being a wheelchair user through an accident when she was young. They both work extremely hard, have been blessed with two wonderful children, Roy and Lucy, my grandchildren; and as they are very busy trying to juggle work, family life and umpteen medical appointments etc. etc. I have taken on the mantle of chief fundraiser!
Lucy is a bright, happy and beautiful little girl who is always smiling and will be 4 in September. During 2015 after many years of diagnostic tests both Lucy and her older brother Roy aged 7, were diagnosed with a rare degenerative neuromuscular condition called Spinal Muscular Atrophy (SMA) Type 3.
The effects of SMA can vary greatly and this is clearly evident between Roy and Lucy, Lucy can walk tentatively but cannot do so safely anywhere accept around her home. This is why I am fundraising to purchase Lucy her pink power chair.
In the UK approximately 100 are born with this rare condition each year (One in every 6.000 – 10.000 births). SMA is caused by a fault in the gene called Survival Motor Neuron 1 (SMN1). This gene carries the information required for the production of an important protein. When there is not enough of this protein, the nerve cells (motor neurons) deteriorate. Electrical signals from the brain through the spinal cord can no longer consciously contract the muscles leading to muscle atrophy. For further information please visit: http://www.smasupportuk.org.uk/about-sma
Lucy is currently on a waiting list for a loan of a WizzyBug from Designability: http://www.designability.org.uk/product/wizzybug this is a fun and innovative powered wheelchair which enables children to enjoy and experience of mobility with their “first wheels”. Helping develop spatial awareness, social interaction and independence; people (especially children) learn by exploring their environment, studies have shown without independent mobility, people develop dependency on others – “learned helplessness”. Hopefully Lucy will be able to pick up her Wizzybug in July/August, however Lucy will grow out of the Wizzybug before she even starts primary school next year.
Lucy is entitled to a power chair from the NHS, however as everyone knows the NHS is constrained by cost and the products they can provide. The power chair will meet Lucy’s “clinical” needs but as any parent can understand they want the best (and appropriate) solution for their children. A practical example of this is that the NHS will not provide a height adjustable power chair as this is not seen as a “clinical” need, but this is a very important “social” requirement, allowing Lucy to maintain eye contact with her peers as they continue to grow taller and practical needs such as adjusting to fit under tables. There are other safety features we require for example a remote stop function, this would allow Allyson and others to safely “stop” Lucy’s power chair should she attempt to cross the road unsafely or be distracted while using her power chair, which I’m sure most parents of young children can relate to. The power chair must be "auto dock" compatible as Allyson will not manage to manually secure the power chair with straps and tie downs in a Wheelchair Accessible Vehicle.
So please can I ask you to give a what you can comfortably afford to help our family project, every little will help to make Lucys's life a little easier and we all thank you from the bottom of our hearts, your generosity is very much appreciated by us all!
Lucy is a bright, happy and beautiful little girl who is always smiling and will be 4 in September. During 2015 after many years of diagnostic tests both Lucy and her older brother Roy aged 7, were diagnosed with a rare degenerative neuromuscular condition called Spinal Muscular Atrophy (SMA) Type 3.
The effects of SMA can vary greatly and this is clearly evident between Roy and Lucy, Lucy can walk tentatively but cannot do so safely anywhere accept around her home. This is why I am fundraising to purchase Lucy her pink power chair.
In the UK approximately 100 are born with this rare condition each year (One in every 6.000 – 10.000 births). SMA is caused by a fault in the gene called Survival Motor Neuron 1 (SMN1). This gene carries the information required for the production of an important protein. When there is not enough of this protein, the nerve cells (motor neurons) deteriorate. Electrical signals from the brain through the spinal cord can no longer consciously contract the muscles leading to muscle atrophy. For further information please visit: http://www.smasupportuk.org.uk/about-sma
Lucy is currently on a waiting list for a loan of a WizzyBug from Designability: http://www.designability.org.uk/product/wizzybug this is a fun and innovative powered wheelchair which enables children to enjoy and experience of mobility with their “first wheels”. Helping develop spatial awareness, social interaction and independence; people (especially children) learn by exploring their environment, studies have shown without independent mobility, people develop dependency on others – “learned helplessness”. Hopefully Lucy will be able to pick up her Wizzybug in July/August, however Lucy will grow out of the Wizzybug before she even starts primary school next year.
Lucy is entitled to a power chair from the NHS, however as everyone knows the NHS is constrained by cost and the products they can provide. The power chair will meet Lucy’s “clinical” needs but as any parent can understand they want the best (and appropriate) solution for their children. A practical example of this is that the NHS will not provide a height adjustable power chair as this is not seen as a “clinical” need, but this is a very important “social” requirement, allowing Lucy to maintain eye contact with her peers as they continue to grow taller and practical needs such as adjusting to fit under tables. There are other safety features we require for example a remote stop function, this would allow Allyson and others to safely “stop” Lucy’s power chair should she attempt to cross the road unsafely or be distracted while using her power chair, which I’m sure most parents of young children can relate to. The power chair must be "auto dock" compatible as Allyson will not manage to manually secure the power chair with straps and tie downs in a Wheelchair Accessible Vehicle.
So please can I ask you to give a what you can comfortably afford to help our family project, every little will help to make Lucys's life a little easier and we all thank you from the bottom of our hearts, your generosity is very much appreciated by us all!
Organizer
Sue Manson
Organizer
