Based in Ayr, Ayrshire
Incredibly sadly, Emily died on 4th October 2021, aged just 5. It's her family's wish for her mission to stand as a tribute and legacy for a very special little girl.
As told by Emily’s mum, Samantha …
Emily was born on the 27th July 2016 by emergency caesarean after a scan at 37 weeks showed she was going into multi-organ failure. She remained poorly into toddlerhood with frequent infections. It was suspected that Emily had a form of cancer affecting her immune system
In December 2018 the diagnosis came
– it was Pearson Syndrome
… a form of mitochondrial disease. Emily was the only case in Scotland at the time, with less than 100 worldwide. Digestion and liver problems, fatigue and muscle weakness were just some of the symptoms alongside the immunity issues.
Despite her ill-health, Emily grew from an adorable baby to a cute, feisty little girl who loved all things pink and sparkly. Adored by our older children, Natasha, Daniel and Nicole, Emily had us all wrapped around her little finger, including me and dad, Kevin.
Nicknamed, ‘Princess Emily’, she loved Disney princesses, starring in TikTok videos and buying B&M pyjamas. She was a little ‘foodie’, with sweeties and roast dinners her firm favourites, especially Yorkshire pudding!
The 2020 pandemic meant Emily’s vulnerability was a massive worry. The mildest of infections posed significant risks to her life. Isolating at home kept her infection-free for 18 months. In May ’21 she caught a common cold and a severe temperature spike which meant she had to be admitted to hospital. While there, she developed further complications which increased fears for Emily, who was already fighting so hard.
Her already weakened body couldn’t cope.
By July she was in a coma.
Specialist care in London was considered, but Emily was deemed too poorly. She came home in September before going back into hospital where she passed away peacefully in my arms on 4th October, aged 5.
Thanks for reading my story.
Emily’s Mito Mission is a special legacy
for our gorgeous little girl
… who will be in our hearts always. Just as she’ll live on within our family, we’d like Emily, and her story, to live on and inspire others.
We want a future where nobody
is told there are no treatments, or cure
… or loses a precious loved one to mito, like Emily. We know that with the help and kindness of our family, friends and community, we can raise some awareness and funds for research together.
Emily's Mito Mission
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