Sarah Bevan
5 days, 5 marathons - Rich smashed it this Easter!
Fundraising for Societi, The UK Foundation for Kawasaki Disease
Story
A HUGE Thank you to everyone that Sponsored! To read more about how Rich got on, please take a look at:
https://mailchi.mp/3109860079a5/5marathons5dayscompletedtoraiseawarenessofkawasakidisease
Rich had planned to complete his 5 days 5 marathons challenge Easter 2020 but that was when we went into our first National Lockdown. Since then, our initial fundraising platform Virgin Money has closed down so we have set up this new page. Up to this point we have raised £2925 and this has already gone to Societi.
Thank you to EVERYONE that has already supported us!
Click on the Kawasaki Symptoms above to see our updated Media Gallery!
We are a family that have experienced Kawasaki Disease first hand with our daughter Nina who was just 2.5 at the time. Fortunately, in time she will forget or it will become a distant memory, but for us, her parents, the horror of Kawasaki will stay with us forever.
We feel it is extremely important to raise awareness about Kawasaki in the hope that we can help future kids get a quicker diagnosis, quicker treatment and reduced heart implicatons. Nina's diagnosis took too long and Kawasaki has resulted in heart damage for our princess.
Rich's 5 days 5 marathons is happening this Easter!
To raise awareness and and help fund Kawasaki Research, Rich has set himself a challenge of walking the North Downs Way (123 miles) in 5 days - Farnham to Dover! This equates to approximately a marathon a day. The walk will take place over the Easter Weekend (Thursday 14th April – Monday 18th April). Rich has Charlotte, Jason and Lawrence joining him for different legs of the challenge. I am hoping to join him on the last day (childcare permitting!) Please support, anything you can donate will be fantastic!
What are the signs of Kawasaki?
Kawasaki Disease has a range of symptoms including
- a characteristic and distinctively persistent high fever for 5 days or more
- rash
- bloodshot eyes
- “strawberry” tongue
- cracked dry lips
- redness of the fingers and toes
- swollen glands in the neck
Kawasaki Disease can be present with some or all of these symptoms and symptoms often appear in series (i.e. not all at once). Incomplete Kawasaki Disease can be diagnosed with persistent fever plus two or more Kawasaki Disease symptoms.
Kawasaki Disease should always be considered in any child with unexplained persistent fever. Kawasaki Disease is a serious illness. It can cause coronary artery damage – damage to the blood vessels in the heart, and can lead to acquired heart disease in children.
Professor R Tulloh, Professor of Congenital Cardiology, Bristol Royal Hospital for Children and Societi Trustee
Our experience of Kawasaki:
At the beginning of December 2018 Nina age 2.5 was admitted to hospital with suspected Scarlett Fever. She didn’t respond to the antibiotics and a diagnosis was eventually made that Nina had Kawasaki, day 10 of fever. Nina had 3 rounds of treatment and her body then started to respond. We spent 2 weeks at St Peter’s, came home for 3 days and then unexpectedly got admitted up at The Royal Brompton Hospital, after the results of an Echo found several aneurysms in her heart, one classifed as Giant and therefore placing her at risk of clotting in her heart, which can lead to heart attacks.
We spent Christmas in hospital with Nina having daily blood tests, sometimes multiple in a day as well as going through the trauma of cannulas and being hooked up to intravenous drugs continuously. We eventually got discharged New Years Day and Nina came home on Warfarin and a cocktail of other drugs. It was extremely challenging getting the drugs into her, but we managed to teach her to take tablets with water like an adult. Rich and I can honestly say it was without doubt the worst time of our lives.
We are now 3 years on and life has returned to some sort of normality, whatever that may be with two young kids! Looking at Nina now, she’s a typical 5.5 year old, she’s super smart, funny, creative and loves a good cuddle. Nina takes aspirin everyday to continue thinning her blood and is closely monitored by a Kawasaki Specialist Team. Nina has become the “model patient” at having her ECG’s and Echo's. Our most recent visit indicates that she still has an aneurysm but that it is stable. We can only hope and pray that her heart continues to remodel and that she doesn't experience any clotting around the aneurysm.
How can you help us raise awareness and fund research?
- Sponsor Rich on his 123 mile walk by donating via this page or you are welcome to donate cash or cheques offline (please get in touch)
- PLEASE share this information on your social networks
- ‘THINK Kawasaki Disease’ if you see/ hear of a child with persistent fever, plus any two or more symptoms of Kawasaki Disease
Money raised will go to Societi - The UK Kawasaki Disease Foundation
Let’s grow our Kawasaki Conversation right across the UK - together, we can help to prevent lifelong heart damage in our children.
For more information, please visit this very informative website https://www.societi.org.uk
Many thanks for taking the time to read this and much love to you all.
Richard, Sarah, Nina and Edward xxx
