To mark International Women’s Day on 8th March, we want to shine a light on the achievements of mito mum Kerrie – mother, wife, carer, business owner, fundraiser and general all-round inspiration!
Kerrie’s daughter Phoebe wasn’t diagnosed with mitochondrial disease until she was 15 months old. Until then, she’d been a perfectly happy, healthy baby, but one day she just wouldn’t wake up properly, and she had to be rushed to hospital. It was an episode that set Phoebe’s development back significantly, and then the same thing happened when she was four. As is so often the case, Kerrie had never heard of mitochondrial disease and had no idea what it was. But, together with husband Sean, she set about providing Phoebe with the best care possible.
When her daughter was first diagnosed Kerrie was working in a bank, but Phoebe’s demanding care requirements prevented her from going back to her old job. After a while though, Phoebe improved and started attending nursery, and Kerrie suddenly found herself at home with time on her hands. That’s when the seed for her now very successful online business, Vellamaes, was planted, although Kerrie’s very humble about its origins.
“I knew I couldn’t balance a ‘proper’ job, even a part-time one, with Phoebe’s care needs,” she says, “so I came up with an idea, did some sketches and created some keepsake boxes. The aim was simply to sell a couple a month to fund a few family treats.” By 2014 Kerrie had created a fully fledged business, turning precious memories into treasured gifts.
“The most flexible thing I could do”
A few years later the couple welcomed their second daughter, Piper. Now that both girls are in full-time education, Kerrie can dedicate herself solely to the business during the week, something she really appreciates. “It was just the most flexible thing that I could do,” she reflects. “Obviously I had no intention of doing it full time in the beginning, so I have to juggle a lot of things that I didn’t anticipate doing. But it works. And if I need to take Phoebe to an appointment I can just go.”
Kerrie is only too aware of how difficult it can be for a mum of a child with additional needs to hold down a job, even for a super-flexible employer. Sean is a huge help to her, often looking after the girls on a weekend if Kerrie needs to work. Plus he’s more than happy to help with the business – Kerrie fondly refers to him as her unpaid member of staff!
As well as being a busy mum, wife and entrepreneur, Kerrie’s also a friend and fundraiser for The Lily Foundation. She’s eager to spread the word about mitochondrial disease, but readily admits she can’t cook or bake. What she can do, however, is pull on her Lily t-shirt, put in her earphones and run. Kerrie is currently training for The Great North Run in September, and has previously completed various runs and hikes for team Lily.
“I’m a bit of a scaredy-cat,” she confesses, “so you won’t catch me jumping out of any aeroplanes or anything like that.” But she loves running outdoors – it’s an activity that helps her to cope as well. “I’ve got things for me,” she explains. “I’ve got work, I’ve got my running, and then obviously we come together as a family. It’s just trying to keep everybody happy but making sure you keep yourself happy too.”
We asked Kerrie what was the biggest challenge she faces in caring for a child with a mitochondrial disease diagnosis. “The unknown,” she responds instantly. “Not knowing what’s coming or when it’s coming. Things can change so quickly, one day things are fine and the next day Phoebe can be so ill, with no warning.”
Kerrie and Sean feel blessed that Phoebe’s been part of their lives for 14 wonderful years now, but they’re very aware that the clock is ticking. They can’t ever forget that she has mitochondrial disease, but what they try to do is live as normally as they can and enjoy their busy lives together. But the reality is ever-present: “You have this expectation when you have a baby, that they’re going to grow up and do this and do that, and then go off and get married and have a baby. That won’t happen for Phoebe. She’s never going to walk. She isn’t going to talk. I’m just trying to be realistic without dwelling on things.”
“If it’s not in the diary, it’s not happening!”
So what’s Kerrie’s secret? It’s actually very simple. “If it’s not in the diary, it’s not happening!” In fact, there isn’t just one diary, there are three – the phone diary, a physical diary and a wall planner. Then there’s a weekly round-up so everyone knows where they need to be and when. Sometimes Sean goes away with work which adds an extra dynamic, and then there’s the dog to be walked – most mornings at 5 o’clock!
“It’s hard,” Kerrie admits. “Sometimes I do think, why do I do this to myself? I have to be very organised – to the hour. It takes a lot of prep and planning. If it’s an early morning, it needs to be an early night. If I try to do it all, it just doesn’t happen. There’s no amount of coffee that will keep me going!”
Kerrie might sound modest about her achievements, but we think her honest attitude is incredibly refreshing. “I don’t have all my ducks in a row,” she acknowledges. “It doesn’t always go to plan, and that’s ok. It’s not the end of the world – you can’t be in two places at once. It’s being open and honest when you can’t do everything. It’s not all plain sailing but we make it work – we get out what we put in.”
Sound advice from a woman who’s bravely navigating her way through her child’s incurable disease. Whether International Women’s Day for you is about celebrating the successes of women all over the world or continuing the fight for equality and women’s rights, let’s also take time this year to celebrate our own achievements, great or small.