Callie's mission is run by her loving family. Her story highlights how something as simple as a gastro bug can turn lives upside down, and how it's possible to thrive and defy the odds.
Our beautiful Callie was born on 10th November 2022 at 36 weeks after a slight complicated pregnancy, but with no indication of any significant issues, and was a healthy baby for her first year of life.
In November 2023, our lives were turned upside down when Callie contracted a gastro bug which caused vomiting and prevented her from eating as much, but we had no serious or abnormal concerns, and the vomiting stopped after a few days After putting her to sleep as normal, I checked in on her around midnight, and she looked red as a tomato. I picked her up, and she became grey and limp. Her dad was trying to administer CPR as we waited for an ambulance to arrive, but it seemed like nothing was helping. She had gone into cardiac arrest in response to the bug.
Callie was in ICU for two weeks or so, and nobody could figure out why she had reacted so drastically to a simple bug – something wasn’t right. Lots of tests were administered until finally, just as we were about to be discharged, genetic testing was ordered.
Of course, we hadn’t heard of it, or mito for that matter. Her specific variant is so incredibly rare, we struggled to find information or support but were determined to speak to as many people as we could who might have some insight. The few doctors with PPA2 patients around the world tried to explain to us over Zoom that if she got sick with any kind of viral illness, ever consumes any alcohol or ethanol, or gets a temperature, she could go into cardiac arrest. It hit our family really hard – we had been ready to leave the hospital and go to visit Santa.
We asked doctors, ‘What’s the plan? What treatments and medications will she be on?’, and they simply replied, ‘Nothing.’ They could only try to control her illness.
We live every day as it comes; doctors had little to no faith from the beginning, but our Callie keeps proving them wrong. She caught COVID, RSV, vomiting bugs and all sorts in hospital but thrived through all of them. Each time we thought it would be the end, but it wasn’t.
They told us she would never walk again, which she’s now learning to do, and that she’d suffered significant brain damage and would be ‘in a vegetative state for life’ – but she’s smiling, moving and thriving!
In January 2024, doctors attempted to place a loop recorder in Callie’s chest. The surgery seemed to go fine, but as days passed, it was clear her body had rejected it as it seemed to burst out of her chest.
Then in April, we travelled to Dublin where surgeons implanted an ICD, which can shock her heart and restore her heartbeat if anything goes wrong and saves us from carrying around an external defibrillator. This kind of equipment doesn’t work 100% of the time though, especially in young children, something we’re very aware of.
Callie is a bouncy girl who always has the biggest and brightest smile on her face, she loves to play with everybody all the time and she’s a true wild child, the boss of the house! She uses a feeding tube and is beginning to speak, despite being delayed and facing the challenges she has. We carry a card that helps us to explain the seriousness of the situation to medical professionals if needed.
She has an older sister, Amelia-Rose (5) and lives with me, her dad Ryan, my brother Freddie (10) who I foster, my grandparents, and our two dogs. We were pleased to find out that Amelia-Rose and our other family members aren’t affected, but Ryan and I are carriers.
…that is much needed. When I tell people what Callie has, they look at me like I have ten heads!
We live on nerves every day, but we’re determined to help Callie keep proving everybody wrong and raise funds for research into mitochondrial disease. We also believe that mitochondrial research should have a much higher profile in the medical community,
Any funds raised by Callie’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 Callie’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Callie’s mission, choose a way that suits you below.
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.
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.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
