A Redruth man walked 150 kilometers non-stop in 36 hours to raise money to fight the disease that tragically killed his baby goddaughter.

Kev Riddle undertook the mammoth walk around the Mount Ambrose Cricket Field, starting at 8am on Sunday June 9 and finishing just after 7.30pm on Monday June 10.

Falmouth Packet:

Kev walked 150km around Mount Ambrose Cricket Ground

His goddaughter Steren Thomas lost her fight with mitochondrial disease on October 23 2018 when she was only 15 weeks and two days old.

Kev's walk raised £1,757.43 for The Lily Foundation, a charity dedicated to fighting the disease, smashing his target by more than £500.

He also completed a sponsored bungee jump in March, bringing his total raised for the foundation to more than £2,000.

There is currently no cure for mitochondrial disease. The Lily Foundation is helping to fund research in hopes of eventually finding a cure.

Steren's mum Claire Thomas penned a moving tribute to her daughter that was sent to the Packet.

Steren's Story, by Claire Thomas:

Steren Nessa was our shining star who completed our beautiful family on July 8 2018, at an impressive 10lb 8 3/4s.

Steren was a content, happy little girl who brought light to so many. Ellowyn was a proud, protective big sister who loved her just as much as Mark and I.

Within the first few weeks Steren thrived wonderfully. At around four weeks Steren dropped a few centiles but still gained (not as much as she should). This was put down to her ‘finding her weight’ due to being such a big baby.

As the weeks progressed, small things started to happen, reacting to her milk, sleeping longer, dropping bottles or not finishing them.

Then at eight weeks old Steren showed signs of jaundice.

On September 10 we took Steren to Treliske Hospital (our local hospital) where she baffled the Doctors. They discovered her liver was larger than it should have been and her blood levels showed signs of needing further investigation. We were then transferred to Bristol Children’s Hospital on September 14 where the bombshell was dropped on us... Steren showed signs of liver failure with a working diagnosis of mitochondrial disease.

At this stage the consultant stated that Steren only showed signs of the mitochondrial disease effecting her liver, which would be incredibly rare.

After just over three weeks at Bristol, Steren’s liver deteriorated further and she went into acute liver failure and needed moving to a hospital with a liver specialist.

On Sunday October 7 Steren was transferred to Birmingham Children’s Hospital, where after further investigations and numerous tests, it was decided Steren needed a biopsy to determine what was going on with her liver and at the same time to get a muscle and skin biopsy to help diagnosis the mitochondrial disease.

Due to the general anaesthetic and these biopsies, Steren's little body was not strong enough and she needed help with her breathing and was moved to PICU.

Over the next few days Steren slowly deteriorated, needing more and more intervention and support and on the October 23 Steren's little body could no longer muster the energy to fight.

As parents we had to make the decision no parent should ever have to make and turn off her support. Steren passed away peacefully in our arms.