Team Charlie's Angels, consisting of Charlotte (Josie's mum), Hannah and Bex (Josie's aunties) and Lisa (a dear friend of the family) are taking on the MDUK Pedal, Paddle, Peak Challenge in July 2023 to support the Chubb's campaign in raising awareness and generating funds for some much needed research and equipment for a cause and story that could not be closer to our hearts.

Pedal, Paddle, Peak involves a 30 mile cycle, a 2 mile canoe paddle and a climb up the second highest peak in England. 

We are doing this for Josie Chubb who suffers from a rare progressive muscle wasting condition, Ullrich Congenital Muscular Dystrophy, for which there is currently no cure or treatment.

We would be grateful if you could take the time to read about Josie's story (below) and why we are raising money for The Chubb's Crusade campaign!

Thank you.

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THE CHUBB'S CRUSADE STORY

After 2 years of medical investigations, Josie was finally diagnosed in July 2021, at the age of 4, with Ullrich Congenital Muscular Dystrophy.

The condition is very rare and progressive with no treatment or cure and limits every aspect of Josie's life.

Over time Josie is expected to lose her ability to walk independently which could happen as early as seven years old

Children with this condition can also experience breathing problems while sleeping because the muscles that assist breathing are affected and as such night-time non-invasive ventilation is required.

Another problem frequently encountered by children with UCMD is difficulty feeding and as such a small surgical procedure called a gastrostomy can be performed, which entails inserting a tube directly into the stomach.

Josie is a bright, fun-loving little girl who is very sociable and loves nothing better than playing with friends and being part of everything.

Josie's condition means she cannot run, jump, climb stairs or transition from seated to standing. The condition reaches further than just the legs, it also means Josie has weak upper body strength affecting her arms, torso and neck. Everyday tasks are significantly more difficult if not impossible for Josie without adult support. She must wear knee high orthoses and has to take part in a regimented lengthy stretching routine every night to try and prevent progression of the condition.

Josie now has a power wheelchair to help her access the outside world.

As the condition progresses, significant equipment and adaptations will be needed in order for Josie to take part in everyday living and for us to aid her independence.

Josie's condition impacts hugely on the family. Days out cannot be had on a whim or without careful thought and planning as to access and suitability for Josie.

Josie has a younger brother, Harry, who at a very young age needs to be mindful of Josie's limitations and the high level of support she requires. Sharing your time as a parent of more than one child is filled with challenges at the best of times but when one child requires additional support and time, you are faced with the additional challenge to ensure each receives the same amount of your time.

We have set up The Chubb's Crusade - Understanding Ullrich to raise awareness and funds for Muscular Dystrophy UKs Ullrich CMD Appeal.

For us it is not just about raising funds, it is also about raising awareness for all those with a disability and how society needs to be more inclusive.

I once heard someone say, it is the environment we are in which makes us disabled and not just the disability itself. If the environment we are in enables us the disability becomes less relevant.

Like most parents the most important thing for us is that our children grow up happy and healthy and we strive to do everything we can to enable them to fulfil their dreams.

This is our heart and soul laid bare because if people are not aware how can they be expected to understand and change.

We ourselves lived in relative ignorant bliss before we were introduced to this new world but now we feel it is our duty to raise awareness and promote understanding.

We are not asking for your sympathy, what we ask for is understanding and to raise awareness and of course money!

Fundraising will be split 80/20 between MDUKs research into Ullrich Congenital muscular dystrophy and help support The Chubbs Crusade Understanding Ullrich with future welfare needs.