Sue (Bournemouth)

My name is Sue. Seven years ago my daughter gave birth to twins. They were delivered eight weeks early. A boy and a girl. Will and Isla. Isla weighed just over 3lb and Will weighed 2lb.

Isla was strong and healthy for such a small baby but Will had problems. He was floppy and his respiratory function was very weak. He was finally diagnosed with x-linked myotubular myopathy. This is a devastating disease carried by the females in the family but manifesting in the boys. We discovered that the range of the symptoms is huge and we were told that Will was 99% poorly. This diagnosis brought home to me the reason I had lost two boys but had successfully given birth to three beautiful girls. After investigations all three of my girls are carriers of the myotubular gene.

We rallied. We are a strong family. We watched Will struggle daily with the effects of this devastating condition. He was loved so much. He spent so much of his life in hospital fighting infections. We lost Will a month before his third birthday.

As a family we have always helped raise money to support The Myotubular Trust and continue to do so. The work these small charities do is huge and it is so important we get the word out about these dreadful conditions which are unknown by so very many, as the condition is not only rare but has a name which is so hard to remember. The work Toni is doing to bring recognition to these conditions is huge too. Continue to spread the word please, only then can research continue in the hope of eradicating centronuclear and x-linked myotubular myopathy.

I have a sunflower garden every year for Will and will support Toni in everything she does.

Thank you

sue3

sue2

Warden Abbey Vineyard

Warden Abbey Community Vineyard is situated between Old Warden and Cardington in Bedfordshire. Founded in 1136 the site was one of the earliest Cistercian settlements in England until the English Reformation led to its dissolution by Henry VIII in 1536. Vines were first planted at Warden Abbey Vineyard in medieval times by monks at the Cistercian Abbey of Warden and today the aim is for the vineyard to offer a unique community and educational resource, horticulture therapy, volunteering, and wildlife and heritage projects

Jane Markham, Vineyard/Project Manager says: Vines were first planted at Warden Abbey Vineyard in medieval times by monks at the Cistercian Abbey of Warden. The aim is for the vineyard to offer a unique community and educational resource, horticulture therapy, volunteering, and wildlife and heritage projects.

In 2013 one of our volunteers suggested we use an empty row in the vineyard to take part in The Big Sunflower Project. It was hard work digging over the row, but we looked forward to a stunning show of flowers later in the year.

We started our plants off in small pots which volunteers took home to look after, then planted them out at the end of May. The plants proved an instant hit with our local rabbits, who viewed the sunflowers as a fantastic new snack bar.

We thought we had protected the small plants by ringing them with cut off lemonade bottles but as soon as the shoots emerged above the top, the rabbits were getting them. So we planted up a second batch, and this time made small towers of our plastic bottles, and even used vineguards – tall tubes designed to rotect young vines.

Weeded and watered by our volunteers and visiting school children, there were times when they took up more attention than we should probably have spared, and there were times we doubted we would succeed in growing any at all. But in the end, it was so worth it. We finally got a good show of flowers and they looked fabulous. But more than that, our ‘sunshine’ row has been a great talking point for all our visitors who we’ve been able to tell about The Big Sunflower Project and hopefully help raise awareness of centronuclear and myotubular myopathy. The sunflowers have been a cheery presence in the vineyard over the summer and you can’t help smiling when you see them. I think the monks would have approved.

At the end of the year the vineyard saved the sunflower seeds for planting again in 2014.   Jane Markham says:

The saved seeds were planted in pots for us first by the grand-daughters of one of our vineyard volunteers. Then a number of volunteers took some of the pots home to look after them until they were ready to plant out in the vineyard. The first lot were planted for us by team members from OMRON Electronics who were on a community volunteering day in the vineyard.

The sunflowers were a great success as we learnt a lot of lessons from last year’s experience – especially about keeping slugs and rabbits at bay. During the summer of 2014 we started doing group tours of the vineyard and without fail each group has asked why we are growing sunflowers in a vineyard so it’s a great opportunity to raise awareness of The Big Sunflower Project and centronuclear and myotubular myopathy.  Also lots of questions about them at our Open Day where we had over 750 visitors.

Sunflower growers at Warden Abbey Vineyard in Bedfordshire

Rachel

In 2011 Rachel grew a variety of sunflower called Giant Russian which can grow anything from 6 – 15 feet tall. Rachel lives in Oswestry and two of her family are diagnosed with centronuclear myopathy. Rachel says:

When I heard about The Big Sunflower Project I wanted to get involved, as it’s a fun way to raise awareness of centronuclear and myotubular myopathy and sunflowers always put a smile my face.

I had recently cleared a big border of nasty weeds and needed something to fill the space quickly before the weeds showed me they were still boss. Behind the border was a high hedge, so the easy choice was the Giant Russian variety. I started my plants off on the kitchen windowsill and transferred them outside when they were a bit established, planting them one foot apart. They filled the space nicely and when they flowered, smiled over the top of the hedge at passers-by, meaning they could enjoy them too.

I had only ever grown sunflowers once before and they were the small ones which can be grown in pots with multiple flowers, so this was a first attempt at the big ones. They were a big success and the bees loved them.

I think the way for sunflower growers to out fox the slugs is to think big, even the hungriest of slugs will get full before making a big impact on Giant Russians. I didn’t feed my sunflowers, only gave them water – had I fed them too, I fear they may have turned into Triffids’.

Sunflowers grown by Rachel in Oswestry

Pernille

Pernille Rahr Maansen lives in the countryside of Northern Jutland – part of Denmark. Pernille has taken part in the project several times, harvesting seeds from the first year, to plant again the next year. Pernille says:

My husbands younger brother and his wife, have had two boys who died because of myotubular myopathy, one right after birth and one lived to be 1 1/2 years old. I learned about the project from my sister in law who had some extra seeds and asked me, in the spring, to grow them and share the pictures. I had both yellow and beautiful red ones. They didn’t grow to be very high, I think the highest was 1.40 metres and the flower not as big as I’ve seen them but they have had several flower heads on each and my yellow flowers flowered into November.

I hadn’t grown sunflowers before and had no clue how to do it best, to get most flowers to grow. So I took the seeds and planted them in pots and put them on my terrace, because it is nice and sunny there in springtime. I think I planted them in late April and then I waited to see the results. I think that 3/4 of the seeds were successful – as they grew bigger I planted them in bigger pots and when they were about 0.5 – 0.8 metres.

Moorsholm in Bloom

Moorsholm in Bloom participated in The Big Sunflower Project for the first time in 2014. Moorsholm is a village on the edge of the North York Moors. Its name is of Viking origin and means a Moor.  RHS Britain in Bloom began in 1964 and today is one of Europe’s largest horticultural campaigns with more than 1,600 cities, towns, villages and urban communities participating each year to show off their achievements in  environmental responsibility, community participation and horticultural achievement. Barbra from the groups says:

Moorsholm in Bloom was formed in 2009 as a volunteer group mainly working in the grounds of St Mary’s Church. We found out about the work of The Information Point quite by chance but were really keen to show our support. Coincidentally the RHS were also using sunflowers in their campaigns to celebrate their 50th anniversary and we had to grow a really large batch of them, so we organised a seed sowing morning with the children in our Little Planters group as we had decided to use the seeds given to us by the Information Point in our community garden. The sunflowers were sown into fibre pots which can be planted straight into the ground without any disturbance but disaster struck just as our little seedlings were growing well. They were just such a tasty snack for the armies of slugs which have been around this year.

A second batch was quickly sown and the pots set on sharp grit which did the trick. Lovely healthy plants went into the ground in early June and they grew happily over the next few weeks. We grew Russian Giants together with a smaller variety called Teddybear. They have been fabulous growing to about ten feet high and admired by villagers, visitors and the National RHS judges who had their photos taken with them. We gave them a bit of company in the form of our anniversary scarecrows Roy and Al who loved sitting amongst the flowers.

The Information point is doing a great job in highlighting their work and we are proud to support them.

Moorsholm-scarecrows

Melissa

Melissa lives in Florida USA and in 2012 and 2013 planted her own seeds and submitted photos of her sunflowers to help raise awareness of centronuclear and myotubular myopathy.

Melissa and her husband Matt are the founders of Hope from Harrison, a charity committed to raising awareness and resources for the families of critically needy children who require hospital or in–home medical care.

Hope From Harrison was created to honour the life and memory of their son Harrison Everett Hudson while providing relief, knowledge, reliable in-home care, and other specialty services tailored to individual patients and family needs.

Mark

Mark lives in Great Sutton in Cheshire. He is married with two daughters, Kate and Emily and has taken part in The Big Sunflower Project since 2011. Mark says:

I learned about the project after reading an article in the Chester Chronicle. The Big Sunflower Project really took my interest. During my first year I started growing my seeds in April and the tall ones eventually grew between 4 – 5 feet. This was my first time growing sunflowers or anything from seed and I have learned how the simple act of placing a seed in a pot, can four months later, lead to fantastic and vibrant coloured flowers in the garden, which I think is a wonderful end result. It was also a constant reminder of the work that The Information Point for Centronuclear and Myotubular Myopathy provides and I passed this on to family and friends.

After a few battles with Mr and Mrs Snail I managed to carry on and grow five plants. It has given me such satisfaction and interest. It has also shown how important they are to nature, we have never had so many bees in our garden.

I myself have three debilitating conditions which can flare up one at a time or all at once and the need to keep a positive mind I feel is so important along with the support of my family and friends. The growing of the sunflowers gave me a focus / purpose to go outside, sometimes just for 30 minutes or so, which took my mind off what or how I was feeling at that particular time. I have also grown a few vegetables from seed for the first time this year which alongside the sunflowers has given me a fantastic outlet and interest.

Sunflowers grown by Mark in Great Sutton