Romsey Abbey to be lit in memory of two babies

Ellie Mae Muir and Alesha Vincent both passed away before reaching the age of one from mitochondrial disease.

Mitochondrial disease is a genetic condition that can affect any organ or system within the body. Children with mitochondrial disease will often experience developmental delay, muscle weakness, feeding difficulties and the loss of previous abilities like crying, smiling or rolling.

To mark Global Mitochondrial Disease Awareness Week 2019, Romsey Abbey will be lighting its clock tower green between Sunday, September 15 and Saturday, September 21 in memory of the two Romsey children.

Ellie Mae Muir passed away on July 24, 2018 at just nine months old and her mum, Sarah Muir has been making sure people are aware of the disease and that Ellie has a lasting legacy.

Sarah, 35, said: "We always called her a diva baby, she was always crying about something, it was clear something was going on.

"We thought it might have been reflux and eventually she was a lot happier, we assumed we cracked it.

"As time went on we noticed she wasn't moving her arms and legs very much, she had also stopped crying and laughing."

After a lot of testing, Ellie was diagnosed with mitochondrial disease and her parents were told it was the worst it could have been.

Ellie caught a stomach bug, in which Sarah took her to the hospital.

"All of her energy went towards fighting her stomach bug and not keeping her organs functioning, and unfortunately we were told she only had a few days left."

Sarah, from Westering in Romsey, approached Romsey Abbey and they "instantly" said yes to light up the tower in aid of the children, Sarah said there were "no questions asked".

She added: "I am trying to do anything I can in Ellie's memory.

"I want to give as much awareness to Mitochondrial disease as I can."

Sarah has another daughter, Phoebe who is three years old.

Alesha Vincent passed away in September 2017 at the age just ten months old, mitochondrial disease caused her heart failure.

For the past two years, Alesha's grandfather has decorated his house in memory for Alesha with the aim of fundraising for the charity that cared for her.

Her mum, Beckie Vincent, said: "It was so hard to understand and accept that mitochondrial disease took her life something we had no clue she even had until it was too late.

"I think it's really important to raise as much awareness about mitochondrial disease because it affects so many people and it takes so many people's lives but it's something that's just not really known or spoken about.

"I just don't think there is enough education and awareness around it so I am really pleased that the Abbey will be participating in lighting green, bringing the thought and awareness of mitochondrial to the community."

Sarah has set up a Facebook page for Ellie's legacy at www.facebook.com/teamelliemae, you can follow events including the Ellie Mae Rocks event in which they are painting rocks and planting them around Romsey.

The clocktower will be lit every night between September 15 and September 21.