Fast forward to today and Harry is about to turn 13, while Donna has some unfinished business with the race. And what makes Donna’s story remarkable is that when Harry was diagnosed with mitochondrial disease as a baby, doctors said he’d be unlikely to survive beyond the age of 10. Add to that the fact that Donna is registered blind, and you have an inspirational story of a family who keep defying the odds.
A collection of undiagnosed symptoms
At 6 weeks old Harry was diagnosed with bilateral sensorineural deafness. At that point, Donna and her husband Steve had no idea that there was anything else wrong with their son, they were simply trying to come to terms with his deafness. But when Harry was 4 months old he became very ill, suffering the first of many seizures. A trip to hospital followed, and a diagnosis of infantile spasms kickstarted a lengthy process of tests and blood tests and lumbar punctures and scans and MRIs to establish the cause.
Most parents look back fondly on those first months and years with a new baby, but Donna and Steve only remember a blur of hospital appointments, tests and medications. But without a diagnosis Harry was just a collection of symptoms that the doctors didn’t know what to do with. And over time his lack of development, the fact that he couldn’t stand up, couldn’t hold his head up, all caused Donna to suspect something serious. Her maternal instinct was proven right when Harry was finally diagnosed with mito when he was 18 months old.
At least now Donna had a resolution, and her first port of call was The Lily Foundation. From her very first contact with the charity, she’s continued to receive support throughout her family’s journey. “It was so nice to know we weren’t alone,” Donna recalls. “The diagnosis allowed us to meet a whole new group of people who knew what we were going through, and to build that support network and come to terms with the world we now had. In a weird way it was just a relief to have that. It’s so, so lonely when you first get that diagnosis and you don’t know anybody else with it. To know other people who have got it is actually quite comforting.”
The stars aligned
Those years since Harry’s diagnosis have been a rollercoaster. He’s stable at times, unstable at others; he’s been hospitalised and has had plenty of ups and downs, but generally these days he’s doing well. It was in the run-up to his 10th birthday, which just happened to be the same day as the London Marathon back in 2020, that Donna got thinking. “They said he probably wouldn’t live past 10,” she reflects, “so to get this far was a real milestone. It was a fantastic opportunity to do something special, to run the marathon for Lily on Harry’s 10th birthday. It was like it was meant to be! And then the race was cancelled, and I was devastated.”
I’m doing this for Lily and my son and all the other children who’ve got mito”
Bear in mind this is someone who wouldn’t even run for a bus when she was younger. “My parents still can’t believe it,” she chuckles. “I’m the one tottering around in high heels – even when I was nine months pregnant! I’m not a sporty person, I didn’t even own a pair of trainers.” But as a favour to a friend, Donna went to her first park run, went back again a week later, and caught the bug. Her very first race was a 10k in London which she ran for The Lily Foundation. She had no intention of doing longer distances, but everyone asked her what was next, was she going to do a half marathon, and lo and behold she’s since completed not one but eight. And now she’s making the leap to 26.2 miles.
And what of Donna’s own disability? She has Stargardt disease, a genetic condition that meant she lost the majority of her vision when she was just 11 years old. “I have no central vision, and my peripheral vision is damaged,” Donna explains. “I’m not completely blind but I struggle to see obstacles until they’re really close. That makes running a challenge, as I don’t always spot things or people in time. I have had a couple of accidents – I ran into some railings once, which wasn’t pleasant, and I’ve tripped on potholes a few times.” But this doesn’t stop Donna. She usually runs with friends who look after her, shouting out alerts for obstacles like kerbs and lampposts. And her running coach, Michelle, will also be her guide on the day. “It has to be her. She’s run marathons before and is capable of it, and I rely on her. She’s written my training plan, she’s been on this whole journey with me, this time and last, and now we’re just looking forward to the day itself.”
There’s no holding this runner back
Whilst we’re full of admiration for Donna’s bravery, she’s clear that she doesn’t want her disability to define her. “I want to show that anything is possible if you put your mind to it. I can either let this take over and stop me doing stuff or I can just get out there and do it anyway. It’s helped me with Harry as well. It’s hard being a disabled mum looking after a disabled child – on the one hand it makes it even harder, but on the other hand I know what it’s like to live with a disability, and I want Harry to have the best life he can. I’m doing this for Lily and my son and all the other children who’ve got mito. My goal is to raise as much money as I can to give back. Whatever I raise will help the charity and help another child, another family.”
It’s fitting that the week we caught up with Donna also happens to be the toughest week in her training plan – in fact she’d completed a 10k run just before we spoke to her. She’s following her plan religiously, a mixture of interval sessions, hill work and long runs four times a week. “I got halfway through the training back in 2020 before the race was cancelled,” she recalls, “so I knew what to expect. I knew it was going to be tough.”
And after three years of waiting, how is Donna feeling about this milestone now it’s nearly here? “I’m so looking forward to it,” she says excitedly. “I’m looking forward to celebrating afterwards and catching up with all the other Lily runners and the team. I’m nervous but also excited. It’s a real mixed bag of feelings, of being scared, being glad I’m actually going to do it, and there’ll probably be a few tears on the day as well.”
We wish Donna all the best for her run, and we hope she recovers in time to celebrate Harry’s 13th birthday with him three days later! If you would like to sponsor Donna, and help support other families affected by mitochondrial disease, please head over to her fundraising page.
