I've known Lucy since school and in the 20 years since we have always kept in touch. We have each grown up and had our families. However as a family, they have to face something we do not.
8 year old Jett has a severe form of Becker’s Muscular Dystrophy. His legs and arms are weak, they feel heavy and sore all the time, and he suffers excruciating cramps. It also affects his heart and brain. He has learning delays, finds daily life full of challenges, and doesn’t understand social interactions. Every day he wears uncomfortable leg braces (his robot legs) to slow the rate at which his tendons shorten. He takes medications daily and Lucy & Dave have to massage and stretch his legs. Over the years he’ll become more reliant on his wheelchair.
Despite having to face these challenges, Jett and his family are positive, full of fun and responsible for bringing the REAL Father Christmas to a local village hall each year which unfortunately, for obvious reasons they are not running this year. It's one of the many ways they raise funds for;
Muscular Dystrophy UK - who lead research into the disease and emerging treatments, alongside providing information and support to the 70,000 people living with muscle-wasting conditions.
The Jett Pack - to pay for the specialist equipment Jett himself will need as he grows and his conditions worsen, including motorised wheelchair and adaptions to the family home.
We think they shouldn't have to fundraise alone, so my 9 year old son, Ethan, has decided that since he is a little young to grow a moustache, that he and I are going to run 5 kilometres everyday in November in our home town of Lancaster. We will be doing different routes, (he has already worked out a route that is 5k to a well known burger eaterie) and will try to update regularly (I'm not the best at tech).
I'm well aware that times are tough for a lot of people which is why we have only set a modest target but smaller charities are really struggling with their fundraising efforts being severely hampered this year by covid restrictions, this is us doing our little bit to help.
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