Dorset dad takes on 100 mile Jurassic Coast trek in memory of his young son
Leonidas died from a rare liver disease before his 1st birthday
A Dorset dad is taking on a 100 mile trek along the Jurassic Coast in memory of his young son.
Leonidas died in 2019 from a rare liver condition that affects 1 in 17,000 children here in the UK.
Biliary Atresia stops ducts in the liver properly functioning.
Now, Victor Frampton and some close friends are walking 100 miles from Exmouth to Studland Bay in Leonidas' memory.
They've already raised around £3,000 for Kings College London Rays of Sunshine Ward, and Kingfisher Ward at Dorset County Hospital.
Victor and his fiancée Justine are also fundraising to launch their own charity to raise awareness of the condition.
Victor told Greatest Hits Radio Dorset:
"After Leonidas' passing in 2019, Justine and I sat down and spoke about doing something positive so we've come up with the idea of setting up a charity called Leo's Lions.
"We want to raise awareness for Biliary Atresia and also support families that are going through similar situations that we went through, giving them support."
Victor and his team set out yesterday morning and are expected to arrive at Studland Bay on Saturday.
You can find out more about Leo's Lions on their Facebook page.
Leonidas' story by Victor Frampton
"Our little boy Leonidas had Biliary Altresia, it is a liver disease where the bile ducts become blocked and the bile can't flow through properly. Leo became very jaundice and at his worst point he had white soiled nappies. we only found out when he was 11weeks it was a total shock, it went very quickly from going to A&E because he wouldn't stop being sick to being sent in an ambulance to Oxford on life support.
"It was the scariest time in our life, but trying to keep strong for Leo. Going home to get our stuff to go to Oxford with no Leo in our arms broke our hearts.
"Leo had a kasai operation where they attached part of his intestine to his liver in the hope that bile will flow through. Frequent trips to the hospital and everyday worrying was our life. One thing that I've learnt is that there is a test at 3 weeks which can be carried out to find out what type of jaundice your baby has, this is something I never knew existed. If I was more aware I would have pushed for a test for Leo, as they normally operate on babies younger than Leo. We hoped the operation would be effective if not the next step for Leo was to have a liver transplant. We want to make people more aware of this rare illness as knowledge is everything. The earlier a baby is operated on they have more of a chance of growing up with their own liver. Sadly for us we didn't have a happy ending and Leonidas died in November 2019.