The Huddersfield grandparents of a baby born with an exceptionally rare and life-limiting medical condition are appealing for help to raise awareness and funding.
Ella Bates was born with Pearson Syndrome, an incredibly rare mitochondrial disease which affects only 100 people worldwide.
Sadly, it means Ella has a life expectancy of only three to five years.
Now her grandparents, Jane and Jason Bates from Salendine Nook, have set up a campaign called Ella’s Mito Mission which is part of a national fundraising charity to help families affected by mitochondrial disease. They have raised £13,000 so far.
Families across the country have set up their own missions but all with the same aim which is to raise awareness, funds for research and, above all, hope for a cure.
Ella is the daughter of Jason’s daughter, Hannah Bates, who now lives in Bristol with partner Darragh Enwright.
Ella was born on November 28, 2022 at just 34 weeks and two days before delivery Hannah had to undergo an in utero blood transfusion to save her life. This would be the start of a long journey of regular blood transfusions for Ella.
Ella spent the first three months of her life in the neonatal intensive care unit where a number of investigations were carried out to try to find out what was causing her long list of issues including persistent anaemia, increased risk to infection, low platelets, severe reflux and failure to thrive.
Ella’s Pearson Syndrome means 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 but those affected may also have problems with their liver, kidneys, heart, eyes and brain.
Jane said: “At present Ella’s condition is mostly stable with routine blood transfusions every two to three weeks. However, we know that at any time Ella’s condition could deteriorate and her organs requiring the most energy could be compromised.”
Hannah, 31, added: “Our mission as parents is to give Ella the best possible life, creating as many memories as we can while 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.
“We have accepted there is unlikely to be a cure during Ella’s lifetime but 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 can be found.”
By sheer coincidence Jane and Jason had been invited to a fundraising ball at the Cedar Court in Huddersfield to raise money for mitochondrial disease just two weeks after Ella was born and once her diagnoses was confirmed decided they would set up and run Ella’s Mission.
Jane owns Huddersfield Trampoline Academy in Milnsbridge and she and her daughter, Jessica, did a 24-hour bounce to raise money for the charity. Jason, his son, Jack, and friends also did four rounds of golf non-stop at Outlane Golf Club to raise money too.
You can donate to Ella’s Mito Mission at https://www.mymitomission.uk/ellas-mito-mission-bristol/
There are three big fundraising events coming up – all in Yorkshire including one in Huddersfield.
A fundraising ball will be held at the Cedar Court Hotel in Bradford on Saturday, April 6, from 7pm.
A Yorkshire 3 Peaks Challenge will be held on Friday, May 17, and it costs just £35 to take part.
A corporate golf day will be held at Fixby Golf Club on Monday, July 8.
To find out more go to https://www.mymitomission.uk/our-events/ and click on each event for full details.
Written by ANDY HIRST who runs his own Yorkshire freelance journalism agency AH! PR (https://ah-pr.com/) specialising in press releases, blogging, website content and copywriting.
