The Chubb’s Crusade - Understanding Ullrich

Our daughter Josie was born in April 2017. When she was 2 years old, we started medical investigations which, over 2 years later, lead to her formal diagnosis of Ullrich Congenital Muscular Dystrophy in July 2021.

The condition is very rare and progressive with no treatment or cure and limits everything she can do physically.  There is no effect on Josie's cognitive ability.

Josie is a bright, fun-loving little girl who is very sociable and loves nothing better than getting all around her to take part in her imagination play. She loves nature and to be outside and to simply be involved in 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 both night and day and has to take part in a regimented lengthy stretching routine every night to try and prevent progression of the condition. 

Josie has recently had to be fitted with her first wheelchair because she finds it difficult to walk for any distance or length of time as her body fatigues.  We also have a stairlift at home as she cannot climb the stairs to reach her bedroom.

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

Although the condition directly affects Josie it also impacts the whole family.  We have a younger son of 3, Harry, who is also having to learn Josie’s limitations and the high level of support she requires.

We have set up The Chubb’s Crusade - Understanding Ullrich to raise awareness and funds for Muscular Dystrophy UK’s 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 MDUK’s research into Ullrich Congenital muscular dystrophy and help support The Chubb’s Crusade – Understanding Ullrich with future welfare needs.

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