When Kerry and Sid attended their first Lily Family Support Weekend, they were overwhelmed. Like many families newly navigating a mitochondrial disease diagnosis, they arrived filled with fear, uncertainty and heartbreak. Making new friends was the last thing on their minds.
“We were absolutely terrified,” Kerry recalls. “For your first weekend, it’s so emotionally challenging you don’t really take much in and you don’t have the energy for connections. You’re just trying to hold your family together.”
The following year at dinner, thanks to the thoughtful seating plan arranged by The Lily Foundation team, Kerry and Sid were seated with Nikki and John, who were attending their third Family Weekend.
Both families had children living with mitochondrial disease. Both loved running. Their children were of similar ages. And, perhaps most importantly, they seemed like people who would simply get along.
That introduction proved life changing.
More than shared experience
Many families join the mito community hoping to find some understanding from people facing similar challenges. But what Kerry and Nikki have found is something even more special.
“When we were first introduced to The Lily Foundation, you don’t really want to be there, but you think what you’re going to get is that shared lived experience, which is really valuable,” says Kerry. “But I didn’t think I’d meet people like Nikki and John who I’d want to be friends with in any circumstances.”
Their friendship has since grown, from Family Weekends together to visits to each other’s homes and countless phone calls and messages in between.
“We’ve got a lot of other things in common,” says Nikki. “It’s been nice because when we spend time together, it’s not all about mitochondrial disease. We talk about books, places we’ve visited, running and our work in the public sector. Mito isn’t the only thing.”
While mitochondrial disease has brought them together, it’s their shared values, sense of humour and outlook on life that have cemented their friendship.
Having someone who truly understands
There’s comfort in having someone who understands every aspect of life with mitochondrial disease without needing an explanation.
When things are going well, Kerry and Nikki swap book recommendations, celebrate each other’s running achievements and make plans for future visits.
But when things become difficult, they’re usually the first person the other turns to. “If I have to take Ruby into hospital, Kerry’s the one person I want to message to tell about it,” says Nikki. “I know that lifeline is there.”
Kerry feels the same. “When things get difficult, Nikki’s absolutely top of my list,” she says. “Before some of my closest friends that I’ve known for a very long time. Sid and I carry this together, but it’s important to have somewhere else to take your sadness and your worry instead of it always being within your marriage.”
Their friendship offers a safe space for difficult conversations, fears and emotions that can be hard to share elsewhere.
“There are things I can say to Kerry that I couldn’t say to anyone else,” says Nikki. “I know she gets it so it’s a two-way conversation. I don’t think I could ever offend her because we’re on the same wavelength. It’s not the same with other friends who aren’t living with mito.”
“With other friends, there’s the fear that I’m just that friend with the poorly child,” Kerry continues. “That changes friendships. Whereas I know Nikki completely understands what I’m carrying. She knows my mind better than a lot of friends I’ve known for decades.”
For families living with mitochondrial disease, that level of understanding can be invaluable.
Team Ruby and Team Bill
This is a friendship that extends beyond emotional support. Both families are passionate fundraisers for The Lily Foundation and have inspired incredible support through their fundraising teams, Team Ruby and Team Bill.
Each team has taken on extraordinary challenges, including events such as a gruelling challenge involving 10 ascents and descents of Snowdon in 24 hours, which Sid and John did together.
They’ve also shared fundraising ideas and inspired one another’s efforts, helping to raise thousands of pounds to fund vital mitochondrial disease research and support. But there’s no competition between the families.
“It all goes into the same pot,” says Kerry. “It might be in your child’s name but we're all working towards exactly the same goal.”
Instead, they cheer each other on, celebrate successes together and continue looking for new ways to combine forces.
“At the recent Family Weekend we were talking about doing something together,” says Nikki. “Joining forces. That would be fun.”
Friendship for the whole family
The connection doesn’t stop with Nikki and Kerry. John and Sid have developed their own friendship, supporting one another through challenges that can sometimes be difficult for fathers to discuss openly.
The children have formed strong bonds too. At Family Weekends, they swim together, play together and create memories that last long after the weekend ends.
“It’s really special for siblings to meet siblings who understand,” says Kerry.
Growing up in a family affected by mitochondrial disease often means learning empathy, patience and understanding from a young age. Being around other families who share similar experiences helps remind children that they’re not alone.
One cherished memory came during this year’s Family Weekend, when Nikki watched Ruby and Kerry’s daughter Olive playing together in the swimming pool.
“It was just lovely,” she says. “It’s really special to see them sharing so much fun and happiness.”
Recently Nikki shared a video of Ruby taking part in her first sports day. For many families, that might seem like a small milestone. For another mito family, it meant everything.
“We all sat down at teatime and watched it on a loop,” says Kerry. “Everybody understood exactly what it meant.”
Finding the fortune in the misfortune
Both women describe themselves as people who face challenges head-on.
They share information, discuss difficult topics openly and support one another through some of the hardest moments life can bring.
Together, they’ve learned to look for what Kerry calls ‘the fortune in the misfortune’.
One of those fortunes has undoubtedly been this friendship.
Looking back, neither expected to find a friendship quite like this through The Lily Foundation.
“I didn’t think I’d find a friend like Nikki,” says Kerry. “I thought I’d find people who were quite nice and going through something similar, and we’d have a ‘polite’ friendship.”
Instead, she found someone she describes as completely accepting – someone who understands every version of her, on the good days and the difficult ones.
For Nikki, the feeling is simple.
“I’m just really grateful,” she says. “Grateful that you’re out there.”
This International Friendship Day, their story is a powerful reminder that even in the most difficult circumstances, friendship can flourish. Through shared experiences, honest conversations, mutual support and plenty of laughter, two families have found something invaluable – a friendship that gives them the strength to keep moving forward together as they face mitochondrial disease.