Raising for Robbie
Donation protected
I will be running or cycling a mile a day, every day this year in order to raise money for new equipment for Robbie. Robbie has a rare condition called Macrocephaly Capillary Malformation syndrome know as M-CM or M-CAP. It is incredibly rare and in Robbie's case has resulted in servere developmental delay, low tone, lax joints, severe speech delay, mobility difficulties and epilepsy.
Robbie loves to explore and go out and about with his beloved animals as much as he can but unfortunately this is starting to prove a challenge as he grows in size. Recently, he has outgrown his off road buggy and the side bar has completely snapped due to his weight. His wheelchair will not go on any surfaces other than smooth and the NHS do not provide the buggy we need to get him back on the beach and out in the countryside where he loves to be.
Due to his increasing size, I am also struggling to get him in and out of the car. I currently have to sit Robbie on my knee while I stand and slip him back into his car seat where I have to quickly strap him in before he falls/crawls out. Unfortunately, Robbie is now the size of a 11 year old even though he is only 8 and I won't physically be able to do this for much longer. Again, this is not something funded by the NHS.
We will try and fund as much as this ourselves as we can but the sheer cost of these items means we cannot do it alone, particularly when combined with his other therapies we have invested in and daily outgoings.
The fundraising will allow Robbie the freedom to continue being a child and exploring the outdoors and remove barriers to his experiences by buying an off road buggy and a swivel specially adapted car seat.
Anyone that knows me knows I do not run so this is a big challenge for me, any amount will be so greatly appreciated! https://www.johnpreston.co.uk/paediatrics/special-needs-car-seats/jcm-carrot-3-special-needs-child-car-seat
https://www.delichon.uk/delta-all-terrain-buggy-l2
Robbie loves to explore and go out and about with his beloved animals as much as he can but unfortunately this is starting to prove a challenge as he grows in size. Recently, he has outgrown his off road buggy and the side bar has completely snapped due to his weight. His wheelchair will not go on any surfaces other than smooth and the NHS do not provide the buggy we need to get him back on the beach and out in the countryside where he loves to be.
Due to his increasing size, I am also struggling to get him in and out of the car. I currently have to sit Robbie on my knee while I stand and slip him back into his car seat where I have to quickly strap him in before he falls/crawls out. Unfortunately, Robbie is now the size of a 11 year old even though he is only 8 and I won't physically be able to do this for much longer. Again, this is not something funded by the NHS.
We will try and fund as much as this ourselves as we can but the sheer cost of these items means we cannot do it alone, particularly when combined with his other therapies we have invested in and daily outgoings.
The fundraising will allow Robbie the freedom to continue being a child and exploring the outdoors and remove barriers to his experiences by buying an off road buggy and a swivel specially adapted car seat.
Anyone that knows me knows I do not run so this is a big challenge for me, any amount will be so greatly appreciated! https://www.johnpreston.co.uk/paediatrics/special-needs-car-seats/jcm-carrot-3-special-needs-child-car-seat
https://www.delichon.uk/delta-all-terrain-buggy-l2
Fundraising team (2)
Emma Aston
Organizer
Stefanie Lillie
Team member
