Hector Ralph Howlett was born 18th November-2020, he was a longed for rainbow baby who completed the Howlett family and made Arthur the proudest big brother. He hit all of his milestones and was a happy, strong, ‘normal’ little boy. 

It wasn’t until he was 10 months old  that the seizures started…out of nowhere. They were transferred to PICU at Great Ormond Street hospital, and spent a terrifying month in and out of hospital where doctors couldn’t work out what the seizures were or how to control them, before Alpers was confirmed on 22nd October 2021. He had been fine and now they were told there was nothing that could be done and their beautiful boy would likely not last more than a few months. It was heartbreaking. And as friends to Tara, Lee and Arthur it was a shock for everyone.

The family gave Hector the best last few months, adapting to his ever changing needs as he gradually lost all of his skills and eventually his swallow and gorgeous smile. With the support of the lily foundation they were able to make some special memories at centreparcs, which turned out to be their last holiday as a family of four.

Hector sadly passed away in his parents arms at home aged 15 months. Just 4 short months after his diagnosis. Mitochondrial disease is so cruel and can affect any child at any age. 

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.Did you know every day in the UK a baby is born who will develop Mitochondrial Disease! There is no cure for this disease which is for many, debilitating and life limiting. Please stand with us and fight Mitochondrial Disease and fight for hope.I am running 26.2 miles ...... please donate if you can.