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

Fighting mito,
finding hope.

Walking for Sebby

Personal stories

17 May 2019

After losing her young son to mitochondrial disease, walking hundreds of miles in his memory helped Melissa Streete cope with grief and raise awareness about the condition that took his life.

A women with dark hair in plaits in a lily jumper stand on the edge if a mountain

It was my mum's idea to do something big for Sebby. She felt that if people were going to donate their hard-earned money, she wanted a challenge that would involve a real effort and push her beyond her comfort zone. So we did a bit of research online and discovered the Ultra Challenges, which are 100km. We chose the Cotswolds Way Challenge as it was near where I live in Oxfordshire. We both trained hard, but just before the challenge mum was not 100% well, so I ended up taking on the challenge alone. I wasn’t alone for long though, as I met people along the way and walked with them. I work from home and live away from family, and life can get a bit mundane, so signing up to the walk gave me motivation to get outside and get fit, as well as raise awareness about mito and give something back to The Lily Foundation in Sebby’s memory.

You don't have to be super fit to walk long distances, but it does take some training. I took regular walks along the Thames river near where I live, and met up for training walks with some other people in my area who do Ultra Challenges. Sometimes I'd walk to visit my friend in another village, have lunch and then walk back. I got the OS maps out and found tracks across the fields, discovering my adventurous side. I got to see places you don't usually see, because they're away from the road, or you're driving past so you don't notice them. I got to see the countryside where I live in a different way, see the wildlife, and explore new places. I'd persuade my eldest son to join me and we'd walk along the Ridgeway, go on adventure walks across the fields with the cows or conquer Pen-y-Fan.

The Cotswold Challenge must be one of the hardest challenges I have taken on. I remember being on the start line, alone, surrounded by excited participants but all I felt was an overwhelming sense of sadness. With tears in my eyes I put one foot in front of the other and walked, which in a way is what it feels like to be a family living with mito. The first day was enjoyable but I was in pain. The second day was a 6am start. At the start line I felt very nauseous and considered pulling out. Fortunately, I found a group of ladies who took me under their wing, and their contagious enthusiasm helped spur me on. I thought how hard each day is for our mito warriors, and wanted to finish the walk for them. It took me till 10pm but I did it, and my eldest son and husband greeted me at the finish line. I could not believe I had managed the challenge. I do believe that whatever challenge you are taking on, it’s the support of others that gets us through hard times. You just never know when or where support will come from.

After completing the Cotswolds Challenge I caught the walking bug. A couple of weeks later I did the Wye Valley Challenge, but just the one day this time, 50km, with a friend I met training for the walks. Then I signed up to do the 50km Chiltern Challenge with my mum, so she could complete the challenge she’d set herself at the start of the year. We inspired some friends who joined us on our Chiltern journey, so there was a group of us walking together and we all wore our Lily top. There was a really nice feel to the walk, it was a lovely ending to my Ultra Challenges for that year. I'm hoping my next big walk will be the Peak District Challenge in July, and I've already started training for that. Two friends have signed up, and we'll be raising money for The Lily Foundation and Claire House Hospice.

Meeting Jamie Theakston was a really good opportunity to raise awareness about mitochondrial disease. I'd just completed the Chiltern Challenge and I was recovering from that, but when I heard his charity walk for Global's Make Some Noise was taking a route close to where I live it was too good a chance to miss. The Lily Foundation was one of the charities Jamie was raising money for, so I wanted to talk to him about mitochondrial disease to give him a better idea of what the issues were and how it affects families. I was interviewed live twice on his breakfast radio show, and afterwards I got the chance to speak to Emma Bunton too. I walked 20km with Jamie and his fabulous team, and was able to tell them all about Sebby and The Lily Foundation. I would have kept walking and talking all the way to London given the chance. I don’t think I would have been brave enough to do this if I hadn’t already taken on my own personal challenge. I felt I could understand how he was feeling after such a long time on his feet, and I was honoured to be able to represent Lily and help get a lot of coverage from it.

A  boy stands behind a sign that says Pen y Fan next to the sign is a blue ruck sack with a picture of a little boy on it
Melissa's eldest son Marley on Pen y Fan

It's amazing how willing people are to donate, once they hear your story. We have a JustGiving Team Sebby page to show how much we have raised over the years of fundraising, and currently we’re at £15,000 and counting. When I'm doing the Challenges I have a picture of Sebby on my rucksack, and I always get people asking about him. Sometimes when I tell them his story it moves them to tears. People have handed me donations during the challenge, even if they're walking for their own charity. People have the biggest of hearts.

You never know what you're capable of until you push yourself. The hardest thing is just getting motivated in the first place, but then once you're committed it gets a lot easier. You have to get out there and share your story. Everyone involved with Lily knows about mitochondrial disease, so it's easy to forget that outside of that circle lots of people have never heard of it. It's important to get out there and help spread the word. You can't wait for someone to come and pick you up and encourage you outside. You can do whatever you want, when you want, you just need to have the courage.

Walking helps relieve stress, and that helps the whole family. My husband's job can be quite stressful and it's no good having both of us being stressed, so walking helps me a lot. You want to set a good example for your children and look after your own mental health. If you want the children to go out and exercise then you need to be prepared to do it yourself. Me and my eldest go rock climbing and cycling together, and he encourages me to have a go and get involved. You've got to be positive, step outside your comfort zone and try to lead by example. It helps strengthen bonds between us all and also encourages communication.

I once heard someone say you've got to be thankful for something in your life every day. Walking helps me to do that. You're out in nature, connecting with people. Even walking alone can take you out of your sadness and help you appreciate what you've got. Just being thankful for the freedom to go walking in different places and meet people along the way, it gives you strength. Without that I might have just sat down last year and not done very much. Family and friends have been very supportive, and I’m thankful that I have been able to accomplish my challenges for Sebby, raise awareness and hopefully encourage others along the way. However ill Sebby was, I'm thankful that as a family we had those five years with him. Sebby left wonderful memories in many people’s hearts, and I’m grateful for every one.

Donate today

Donate through JustGiving to help The Lily Foundation fight mitochondrial disease and find hope for patients and their families.