How it all began

Are you sitting comfortably? Then I’ll begin.

To tell you how The Big Sunflower Project began I have to take you back in time to 1998 when my father and I were diagnosed with centronuclear myopathy. The condition we were told was rare and we were unlikely to find anyone else in the world with the same diagnosis.

Both diagnosed as adults, we had a mild form of the condition. However the illness was likely to progress and it was likely we would end up in a wheelchair but no one could say how far away that day might be. It was a strange time, for me it felt like an unsatisfactory ending to a ten year journey of tests and dead-ends, like I had been handed something that could explode at any minute … but then it might not.

In 2001 I set up The Information Point for Centronuclear and Myotubular Myopathy. Initially it was to fulfill the project element of a web design class I was taking at college but once the pages were published people began to contact me. Distanced by often hundreds and thousands of miles it turned out there were other people out there, many who had also been told they were unlikely ever to find anyone else with the condition and a global community powered by the internet began to grow.

In 2011 I decided I wanted to do something to celebrate the centronuclear and myotubular community that now existed. The website had recently had a re-design and illustrations of sunflowers featured throughout because of the positive outlook I think they convey – I love the way they grow to such dizzy heights, as if they are on a mission to touch the sky and nothing can hold them back. It occurred to me that many charity fundraising/awareness raising type projects involved people doing something physical – being sponsored to run, swim, climb or bicycle, something that even I, although ambulatory, would not be keen to do. However popping a seed in a pot and nurturing it for a few weeks was something most people could do, whatever their physical ability and that was very appealing to me, because it meant that those diagnosed with centronuclear and myotubular myopathy could take part too.

At first I wasn’t sure I could make the idea work. I had wanted the project to be big but seeds, stamps and envelopes all cost money and then I learned there were rules and further costs involved relating to import and export rules when sending seeds outside of Europe. So I mulled things over for a while. Growing sunflowers to raise awareness of medical conditions was not an original idea but at least I knew that the idea had worked for others, maybe I would be able to put my own spin on the idea if I could obtain funding and seed donations – I decided to give it a go.

Year one was a lot of work getting the project off the ground, obtaining seed donations; applying for funding to pay for administration costs; producing information sheets; posting seeds; contacting the media and not to forget growing the sunflowers. During the first year there were times when I wondered if I had bitten off more than I could chew, as people started telling me their plants had been seen off by slugs and snails, attacked by their cat and even stolen from outside of their property and for a while, I did wonder if my story was going to end up the same way. My first batch of plants were eaten alive but I decided failure was not an option and started again – this time things went much smoother. I enjoyed watching my plants start from seed and grow into giants and by the end of the year was surrounded by sunflowers large and small, reaching skyward with huge flowers and leaves bigger than my hands.

I would like to be able to write that subsequent years were easier but in year two I pretty much had the same experience. I started growing my sunflowers at the beginning of March, in the cut off bottoms of old plastic milk bottles. They grew nicely on my kitchen work surface and on warm days I took them outside to the garden for an excursion to toughen them up, before bringing them back inside at night. If things had gone to plan, I should have had my first batch of sunflowers around July but in the second week of May, I decided my plants were big enough to fend for themselves and I planted them outside. As Julia Roberts once said ‘Big mistake … big … huge’. Within a week my sunflowers were no more. Destroyed by rain, slugs and snails, it was back to square one.

In year three it was the same story and I found myself locked in battle with anything that tried to stop me having my sunflower prizes. My baby plants were treated like royalty, sat high up on the garden bench out of harms way overseeing everything that went on in the garden, gravel was placed on top of the soil they were planted in making it difficult for slugs and snails to reach the plants and they were given protection in the form of shelters made out of plastic bottles while they were small.

By by the end of year four, I felt like I was beginning to get the hang of things and my sunflowers flowered from June well into October and for a couple of years I felt I was winning but in 2017 … not so much. Rain in August saw slugs and snails move into the garden on mass and three sunflowers finally flowered in November. However the project was joined by more people than ever from across the UK and Europe, the USA, Dubai and Ecuador, growing sunflowers to celebrate the life of Emil who was diagnosed with myotubular myopathy and had passed away the previous year. And the project was nominated as a Community Hero as part of the UK Government Department for Digital, Culture, Media and Sport (DCMS) Local Charities Day.

It is now 2020 and the project has been going for ten years which I am incredibly proud of. Through good years and bad, I have enjoyed every one of my years growing sunflowers – caring for my plants and watching them grow from seed, checking on them morning and night, worrying about them if I had to leave them for any length of time and it is hugely satisfying to be rewarded with big smiley sunflower faces at the end of it all.

It has been a joy also to watch not only my own sunflowers grow but the sunflowers of project participants too – they have been grown in the UK, Europe and America, in gardens, on allotments, by schools, hospitals, community groups and even in a vineyard and because I know how much love has gone into each sunflower grown and how proud the growers feel when their flowers bloom, every sunflower photo received is posted online which in turn raises awareness of centronuclear and myotubular myopathy wherever the photos are seen.

To all who have participated in the project since 2011 or supported it in some way, thank you so very much and I look forward to continuing to grow sunflowers with anyone who wants to join me for years to come

Toni
December 2021

Toni is the founder of The Information Point for Centronuclear and Myotubular Myopathy Myopathy and The Big Sunflower Project both of which aim to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy.

To learn more about centronuclear and myotubular myopathy, visit
The Information Point. 

To learn more about Toni visit
A little bit of this – a little bit of that.