Throughout autumn you'll be hearing a lot about Lily on popular radio stations including Heart, Capital, Classic FM, Smooth and many more. You can hear some incredible stories from the people we support, and find out about some great activities and events to get involved in. So be sure to tune in, donate to the campaign and spread the word!
Lily's Make Some Noise campaign kicks off today (Friday Sept 7) with the moving story of Louise Ormrod, who turned to The Lily Foundation after her little boy Freddie was diagnosed with mitochondrial disease at 8 months old. Louise's interview will be airing throughout the day on all the stations listed above, but in case you can't get to a radio we've included her story below, written in her own words.
Freddie’s story
"After we were told Freddie had mitochondrial disease, one of Freddie’s nurses told me about The Lily Foundation. She showed me their website and gave me their contact details. I didn’t contact them straight away, Freddie was 8 months old then and we’d not long returned from hospital having had our lives turned upside down. I guess I was in a haze and didn’t really see the point, we needed time to adjust to the bombshell that had been dropped on us.
It was shortly before Freddie's first birthday I decided to make contact with The Lily Foundation. I’m not sure what had changed in me (everything from that time is a bit blurry looking back) but I think it was the need to be connected to people like us, families that were going through what we were. Nobody existed in our lives who had heard of mitochondrial disease or knew what to say to us anymore. It was a very scary and isolating time.
I remember phoning up and speaking to Liz for about half an hour. It felt so strange talking to a stranger, but she understood, she finished my sentences and knew how I felt. Then I was added to the private chat group on Facebook for the families. This exists so the Lily families (as we call ourselves) have somewhere to vent, cry, ask questions, share tips or celebrate achievements. I think the first time I looked through the page I cried. It was a lot to take in, and it confirmed our new life was going to be hard.
Nothing can compare to being able to talk to people who know, first hand, what it’s like to live with mitochondrial disease."
Fast forward 20 months, and I think we’re well integrated into the Lily family. I regularly use the Facebook group to ask questions about new symptoms and get tips or advice. Through the group I’ve made contact with other mum’s of children with mito, who I message and meet up with. As well as the support group we attended our first Lily Family Weekend in 2017. The annual weekend is an opportunity to spend time with other families, as well as meet medical professionals in the mito field and learn more about the diseases. Sadly, Freddie was taken ill the night we arrived and spent the entire weekend in the local hospital. We are intending to make the weekend this year, with no hospital admissions to disrupt it!
The best thing about The Lily Foundation is being welcomed into a family, a family you probably never wanted to be a part of but, once you found them, couldn’t live without. We all have different journeys with our warriors, but nothing can compare to being able to talk to people who know, first hand, what it’s like to live with mitochondrial disease. On top of that they fund vital research into these diseases. They do everything they can to help find a cure, which is something, obviously, all the Lily families want and try to help them work towards."
A very special thank you to the Ormrod family and Global's Make Some Noise for supporting The Lily Foundation.
