Ella's

Mito Mission

Based in Bristol

Beautiful Ella's story illustrates the heartache that is caused by a diagnosis of a mitochondrial disease. Please read it and help Ella's family spread the word about the vital importance of mitochondrial research.

Read

Read Ella’s
Story

Support Ella’s
Mission

Ella's

Story.

As told by mum, Hannah, June 2023

On 28th November 2022 our daughter Ella was born via emergency c section at 34 weeks gestation. The pregnancy had been a turbulent one and just 2 days prior to delivery, I had to undergo an in utero blood transfusion to save her life. Unknown to us at the time, this would be the start of a long journey of regular blood transfusions for Ella.

Ella spent the first 3 months of her life in the neonatal intensive care unit (NICU), where a number of investigations were carried out to try and get to the bottom of her long list of issues, including: persistent anaemia, increased risk to infection, low platelets, severe reflux and failure to thrive. However, it was only after discharge from NICU that we received the devastating diagnosis.

Ella has Pearson syndrome.

An incredibly rare mitochondrial disease

…caused by a single large scale mitochondrial deletion reportedly affecting only 100 people worldwide and with a life expectancy of only 3-5 years. The genetic changes make it difficult for the cells of the body to produce energy. The disease most commonly affects the bone marrow and pancreas however, those affected may also have problems with their liver, kidneys, heart, eyes and brain.

At present, Ella’s condition is mostly stable with routine blood transfusions every 2-3 weeks. However, we know that at any time Ella’s condition could deteriorate and her organs requiring the most energy could be compromised.

Our mission as parents is to

give Ella the best possible life

…creating as many memories as we can whilst she is well.

We never take a single day for granted and find joy in the smallest of things. Despite all of the poking and prodding, she is such a bright and bubbly child whose cheeky smile lights up every room. She absolutely loves bath time and playing in her pram on long walks.

However, the bigger mission is

to raise money to enable research

…into mitochondrial diseases, and the more research we can do in this area, the more likely a cure is to be found.

We have accepted that there is unlikely

to be a cure during Ella’s lifetime.

However, we can only hope that with the help of Ella’s Mito Mission, one is found in the near future to prevent more families having to go through the pain that we have had to endure.

I remind you to hold your loved ones close

and remember that life is a blessing.

One that should never be taken for granted.

Get involved and

support Ella's cause.

Any funds raised by Ella’s mission goes to My Mito Mission’s central funds to be granted towards research and support projects to benefit everyone affected by mito.

Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Ella’s Mito Mission leaflets – there are so many ways in which you can get involved.

If you’d simply like to donate to Ella’s mission, choose a way that suits you below.

Be a Part of Project 1000 Strong

Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.

Strengthening the future of mito awareness, support and research.

We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.