Fundraising for WCMX (wheelchair motocross) fun
Donation protected
Please click to hear Dylan talking about his wish
Dylan, my son was diagnosed with HSP in 2014.
Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs. Early in the disease course, there may be mild gait difficulties and stiffness
It was a very long battle getting Dylan diagnosed with this progressive illness of which GPs and hospital doctors thought myself and his mum, Melanie were being over protective as we noticed him walking on tip toes after starting to walk at 3.
A the age of 7 and a visit to a new GP in Peterborough, we were reluctantly referred to a physio at Stamford (to waste NHS money apparently), of which was a tearful moment for us that we were being listened to and meant we had a chance of another opinion.
Within 3 weeks we had our chance. We arrived at Stamford ready for a battle to try and be listened too, however we were shocked at how the appointment went. Whilst we were sat in the waiting room planning how we need to try and convince the physio that we believe Dylan has HSP and needs help, it came as a surprise that within 5 minutes of walking into the room, the physio turned around and said 'Unfortunately I'm not going to be able to help your son, as I believe he needs to be seen by a consultant'.
This was like music to our ears, someone believes that Dylan needs looking at further. She told us that she did not want to comment as the consultant is better for diagnosing, but we knew.
However we didn't know that within a week, we had the appointment for the consultant and then he was booked in to have surgery on both legs within 3 weeks meaning he would be going through his 6 weeks school holiday and a week of school with both legs in plaster.
This was the start of this boys amazing bravery and his teaching of others within his school about HSP.
HSP is progressive and is yet to be fully understood on why it effects everyone in different ways as it has many variations. Dylan unfortunately had to begin using a wheelchair in 2017 for going beyond a 30 minute walk as it is all about saving his muscle use to hopefully slow down any muscle wastage this illness is having on his body, as the pro-longed diagnosis is that he will loose the use of his legs.
As you can see from the video, what Dylan wants most of all is to continue his freedom and show others that being in a wheelchair will not stop him nor want anyone to see that a wheelchair can stop dreams.
He dreams of following in the foot steps of Lily Rice, of whom also has HSP and was the first girl in Europe to complete a back flip in her wheelchair.
Therefore I would like to ask you to donate what ever you can so he can fulfill his dreams by buying a stunt wheelchair of which will be around £2,000.
Please keep an eye out as I will be completing some fund raising events to help with our quest.
Many thanks Keith Wiseman.
Dylan, my son was diagnosed with HSP in 2014.
Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs. Early in the disease course, there may be mild gait difficulties and stiffness
It was a very long battle getting Dylan diagnosed with this progressive illness of which GPs and hospital doctors thought myself and his mum, Melanie were being over protective as we noticed him walking on tip toes after starting to walk at 3.
A the age of 7 and a visit to a new GP in Peterborough, we were reluctantly referred to a physio at Stamford (to waste NHS money apparently), of which was a tearful moment for us that we were being listened to and meant we had a chance of another opinion.
Within 3 weeks we had our chance. We arrived at Stamford ready for a battle to try and be listened too, however we were shocked at how the appointment went. Whilst we were sat in the waiting room planning how we need to try and convince the physio that we believe Dylan has HSP and needs help, it came as a surprise that within 5 minutes of walking into the room, the physio turned around and said 'Unfortunately I'm not going to be able to help your son, as I believe he needs to be seen by a consultant'.
This was like music to our ears, someone believes that Dylan needs looking at further. She told us that she did not want to comment as the consultant is better for diagnosing, but we knew.
However we didn't know that within a week, we had the appointment for the consultant and then he was booked in to have surgery on both legs within 3 weeks meaning he would be going through his 6 weeks school holiday and a week of school with both legs in plaster.
This was the start of this boys amazing bravery and his teaching of others within his school about HSP.
HSP is progressive and is yet to be fully understood on why it effects everyone in different ways as it has many variations. Dylan unfortunately had to begin using a wheelchair in 2017 for going beyond a 30 minute walk as it is all about saving his muscle use to hopefully slow down any muscle wastage this illness is having on his body, as the pro-longed diagnosis is that he will loose the use of his legs.
As you can see from the video, what Dylan wants most of all is to continue his freedom and show others that being in a wheelchair will not stop him nor want anyone to see that a wheelchair can stop dreams.
He dreams of following in the foot steps of Lily Rice, of whom also has HSP and was the first girl in Europe to complete a back flip in her wheelchair.
Therefore I would like to ask you to donate what ever you can so he can fulfill his dreams by buying a stunt wheelchair of which will be around £2,000.
Please keep an eye out as I will be completing some fund raising events to help with our quest.
Many thanks Keith Wiseman.
Fundraising team (2)
Keith Wiseman
Organiser
Melanie Hedger
Team member
