Ellathon

Last year we had outstanding success with raising money and awareness for Schaaf Yang syndrome (SYS)

For Ella and children like Ella who suffer with SYS the daily challenges don’t stop. As we may already be aware Ella spent her first six months in hospital a total of 180 days. Her condition is one of the rarest in the world. Ella is just 1 in 1.5 billion.

Ella now three is still non-verbal, has never walked, crawled or sat for long periods of time unassisted. I will continue to do everything I can to support Ella, the charity and the overall community fighting for a better future for our kids.

Ella and Schaaf Yang syndrome rely on us to get the message out there. Our combined mission is to eliminate the challenges of Schaaf Yang syndrome, finding treatments, new and different therapies and the holy grail a cure! Your donation directly impacts this success.

SYS home page where you can see the impact donations have along with our mission https://www.fpwr.org/sys-home

The Challenges

1. 180K for Ella, On February 3rd a minimum of 48 people close friends and family will complete 7.5K run, walk or cycle. This challenge is around the clock midnight to 11pm. Each person has one hour to complete there 7.5K.

2. Rob Cross is running the Brecon to Cardiff ULTRA. A 70KM advanced run that needs to be completed in a day. One of the toughest races in the UK and Robs decided to complete it in Ella's name.

3. We have a Cape to Cape run in Perth Australia being completed by Matthew Tumelty – Challenge is 130KM along the cost and through the WA bush. Normally this takes five days stopping at different camp sites along the coast but not for matt! His mission is to complete three marathons in just two days in April this year!

4. Ending the year with Ellathon This is a 180K challenge that once again represents Ella's first stint in hospital. Here I will be completing a 20KM kayak, straight into 117KM bike then finally straight into a marathon finish. I’ve never ran a marathon or completed more than 30K on a bike before, so for me it’s my toughest challenge to date, yet nothing on what the children suffering with this syndrome have to go through on a daily basis. My aim is to complete the challenge in 16 hours at the end of August this year.

So many people last year donated and I will be forever grateful for all that we achieved together. This is my second year raising money for something that means everything to my family. If you can spare anything big or small, please do. All money goes directly to the charity via this just give page. All challenges and the organisation of them is all self-funded.

Our goal is to raise £18,000.00. Keep an eye on my social page (Instagram @jondlewis9) for updates on training and all things related to our 2024 challenge.

Thanks again for your support you all make a difference that so many don’t see.

Jon x