The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Couple aim for new heights in remarkable fundraising journey

Personal stories

17 May 2023

May is National Walking Month, and two people really feeling the benefit of all that fresh air and exercise are Ami and Danny, who lost their baby son Otto to mito, and who have a mountain to climb in his memory.

A woman and a man standing together on a hill with green fields behind them

Their baby boy passed away when he was only four months old, and since that tragic day the couple have been on a fundraising journey in his memory that will soon see them reaching new heights by summitting the highest mountain in Wales.

Otto was born in March 2021, and on only the second day of his life he encountered difficulties feeding. Various tests followed at the Royal Victoria Hospital in Newcastle, but no one could pinpoint the problem. He was fitted with a nasogastric tube for feeding, and other than this and sleeping a lot, he was just like any other normal baby, meeting all his milestones and even starting to smile at 6 weeks. But Ami had a feeling deep down that everything wasn’t quite as it should be.

When Otto had his 8-week vaccinations he became sick, so back into hospital he went, and Ami and Danny were told he had reflux. What began as an overnight stay for a routine barium swallow turned into a terrifying experience when he began having heart and multiple organ failure. In the middle of the night Otto was rushed to Newcastle’s Freeman Hospital, famous for its paediatric heart treatment, with his parents told to say their final farewells in case he didn’t survive the transfer.

An agonising decision

Otto did survive, and when he arrived he was immediately put on an ECMO machine – a machine that did the work of his heart, lungs and kidneys – for several weeks. However his situation was dire and his life hung in the balance. Ami and Danny faced an agonising choice – go down the route of palliative care, or put their only child through an incredibly risky and invasive procedure to fit a Berlin heart and then wait a year, maybe 2, for a suitable heart donor to come along.

a smiley baby with mitochondrial disease with a feeding tube in their nose

Naturally they wanted to do everything they could to keep their son alive, but just a few days later the results of a muscle biopsy revealed the devastating news that Otto had mitochondrial disease. Their decision was effectively made for them, and the couple reluctantly withdrew all Otto’s treatment. Their beautiful son was moved to a hospice and 24 hours later, surrounded by his adoring family, he passed away peacefully.

Ami and Danny had never heard of mito, and they look back now on the baffling amount of information they had to take in during those dark days in hospital – the incurable nature of this rare disease and its lasting impact on their future plans. The genetic testing they underwent revealed there was a 1 in 4 chance of this happening again. “One week you’re losing your son,” reflects Ami, “and the next week you find out you can’t have any more children without taking that risk. When I saw Otto on life support, and what it did to us, I couldn’t do that again.”

Keeping Otto’s memory alive

Since they said goodbye to Otto, the pair have done a huge amount of fundraising for The Lily Foundation as a way of dealing with their pain. “We’re doing this to raise money in his memory,” Ami explains. “It helps keep his memory alive and keep people talking about him. We don’t get to have those ‘normal conversations’ about how he’s getting on at nursery, or what school he’s going to go to. We don’t get any of that. But we can do this instead.”

Last year Danny and Ami organised a 3-day cycle ride from Berwick to Hexham with a group of friends. Lots more friends and family witnessed the camaraderie of the event and wanted to get involved themselves, so when they started asking the couple what they were planning next, a walk seemed the obvious choice. “We’ve doubled the number of people involved since the bike ride,” says Danny. “There are 24 of us trekking in total. I think a walk is generally more accessible for people, and hey, who am I to stop anyone from fundraising for Lily!”

We’re doing this to raise money in Otto’s memory. It helps keep his memory alive and keep people talking about him.”

And why Snowdon? “Many of us are based here in Newcastle, and the rest are old university friends in Cardiff,” explains Danny. “Snowdon felt equally inconvenient for everyone involved! Plus it’s a lovely part of the UK for a big walk.” Danny has planned the route himself, which covers about 50km over two days. Day one follows part of the beautiful Snowdonia Slate Trail, while day two is shorter but incorporates the ascent and descent of Snowdon itself.

Danny’s not worried about route-finding though: “There are a couple of girls who spend half their time up mountains, so they know how to read a map and use a compass. We’ll be fine! And there’ll be a natural leader setting the pace.” He’s not naming any names though!

The preparation hasn’t been quite as intensive as it was for last year’s cycle ride. “Everyone took it really seriously last year,” says Ami, “whereas this year I think everyone’s thinking “I can walk, I’ll be fine!” We’ve got a bit more equipment though. I’ve got some waterproof trousers, some new socks, new walking boots. At least we’re buying everything!”

The healing power of hiking

However the couple have been walking most evenings and weekends, and are keen to highlight the positives of the pastime. “It’s a nice way to clear the mind after work,” says Ami. “When we walk we have more conversations. If we’re at home we’re usually doing something else like making dinner or working or watching TV. If we go out together for a walk we can chat about stuff in more detail. It’s a great way to connect.”

“Even if you’re a bit tired,” continues Danny, “nine times out of ten you can still go for a walk, whereas you might not want to go for a bike ride or head for the gym. It’s so easy to throw your shoes on and walk.” And the couple are lucky to have plenty of green spaces around them. “I like going for woodland walks,” says Ami. “I can relax and feel like I’m getting away. I feel more refreshed, a bit calmer, when I’m amongst the trees.”

A woman and a man stood together with one arm round each other on a hill with green fields behind them.

Something else the couple found a huge help was the support from The Lily Foundation. They went to their first Family Weekend last year, and are looking forward to attending again this year. “We weren’t thinking of going to start with,” says Ami. “We don’t have a child with mito so we didn’t think it was for us. But I’m so glad we went in the end. It was a massive help.”

“It’s nice to be in a room with other people who understand what you’ve gone through,” Danny tells us. “If you’re with people who’ve lost children to mito, when they listen to your story, and you listen to theirs, there’s a deeper level of understanding. Also seeing families with kids still living with mito, and the positive impact the weekend has – the kids enjoying themselves and the parents getting a bit of respite. That could’ve been us with Otto, and that’s a nice thing.”

If you’re with people who’ve lost children to mito, when they listen to your story, and you listen to theirs, there’s a deeper level of understanding.”

“We want to raise money for The Lily Foundation because of the massive support they’ve been,” he adds. “It feels like we’re doing something for Otto and for other children with mito. And by doing that, it’s like Otto’s helping other kids and other families. Otto went through a lot of pain and suffering and died at 4 months old, but it’s not in vain because by doing this we can still get to talk about him, share his story and raise awareness, and then it’s like Otto’s ultimately doing good.”

If you’re hiking up Snowdon this May bank holiday weekend and you happen to spot two dozen trekkers snaking their way up to the summit, be sure to give them a wave or stop and say a kind word. And if you’d like to support Ami, Danny and their team, please head over to their fundraising page to make a pledge. We wish them all the best of luck for their trek.

Coming soon...