Jesse’s Story – Undiagnosed Children’s Day
Jesse’s Aunt is raising awareness this Undiagnosed Children’s Day by sharing Jesse’s story and hosting a ‘Chase the Chicken’ fundraiser between Bristol schools. Read on to learn more.
Jesse – Our Superhero
Jesse was a happy boy and loved life but he spent his short life in and out of hospitals but was never able to get a diagnosis for his rare condition. Although Jesse couldn’t speak, he could understand most things and had a wicked sense of humour. Six months before he was taken into intensive care he learnt to walk and managed to walk the length of the Clifton Suspension Bridge (now known in our family as Jesse’s Bridge). As a family, we thought this was a ‘game changer’ and had high hopes for what Jesse’s new independence might bring him, but that winter he became ill (potentially an effect of catching Covid which his body was not strong enough to fight) and after five long weeks of fighting, he tragically passed away.
This April marks two years since we said goodbye to Jesse and I wanted to share this story with you as I wanted to help raise awareness about Undiagnosed Children’s Day which is every last Friday of April (so Friday 25 April 2025).
I didn’t know anything about SWAN (Syndromes Without A Name) before Jesse was born and – as an educator – and a proud aunt, I feel it’s my duty to help raise awareness of this important topic.
I was hoping you might be able to help me and SWAN UK to fulfil their ambition of raising awareness of this important charity. Many families will be struggling with this. Perhaps in silence. Maybe there is someone in your school, staff or student who has a family member who is suffering with a syndrome without a name.
I’m hoping in our sadness with the experience we will carry with us forever we can help to do some good and potentially support someone else. For Jesse.
We will be hosting a ‘Chase the Chicken’ fundraiser, please consider donating to raise vital funds this Undiagnosed Children’s Day.
Thank you for taking the time to read and consider donating. You can learn all about the fundraiser below
Many thanks,
Alex, Jesse’s aunt
Chase the Chicken!
A FUN Run to raise awareness for SWAN UK and the CLF Big Trip.
What is it?
This is the CLF Big (and a bit) Run. It is a 15 mile sponsored run around the CLF Bristol schools and some local Special schools to raise money and awareness for the CLF Big Trip and SWAN UK. (This is a pilot for next year’s Big BIG Run – a marathon around CLF schools).
A giant chicken will lead the race and runners behind will follow dressed as superheroes (as appropriate). Children will be invited to wave and cheer the runners on as they run past the school. Some schools (special schools) may open their playground and ‘high five/fist pump’ the runners as they run through their playground.
When is it?
The run will take place on ‘Undiagnosed Children’s Awareness Day’ which is Friday 25th April 2025. Time TBC but likely to be a 10am start with a celebration lunch provided by ‘Jerk King’ held at BFA whereby children from the local special school are invited to meet the chicken and the runners.
Why?
We are raising money and awareness for the CLF Big Trip and SWAN UK:
https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name/
SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. SWAN UK hold an awareness day every year on the last Friday in April, this is called Undiagnosed Children Day.
SWAN UK has a personal significance to Alex but also many of the children we support at SV have an undiagnosed need, which is why we feel this is an important charity to support.
Why Chase the Chicken?
Alex is running for her nephew, Jesse who had a syndrome without a name (see Jesse’s story). During his short life, Jesse faced his fear and taught himself to walk. Jesse also absolutely loved chickens. The Fun Run ‘Chase the Chicken’ is meant to inspire people to face their fears and do things they never thought were possible, like run 15 miles, climb Snowdon or walk across a bridge when everyone told you that you would never be able to walk. Join us and chase your chicken!