Author: thebigsunflowerproject

Nasreen and The Friends of Vale Park: Portslade

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A few seeds arrive in the post and cheer me up right from the start .. hope is a wonderful thing.

It seems like I planted 100 or more, straight into the ground and pots, with children and old of all ages,  at groups in children centre, making seed bombs with scouts, in the park, in people’s homes, at our local corner shop, in cracks along the wall.

I walked with seeds in my pocket and then they popped up! Time for nurturing and protecting .. wind and slugs and weed killer man from the council were watched by me!

The plugs gave me pleasure and a topic to talk about with strangers along the way.  Soon everyone was involved in watching hoping and protecting! An army of sunflower watchers!

And then they bloomed! Some tall, some red, some short, some multi heads.

And now it’s time to draw smiley faces in them .. and messages in larger heads! Like hope.

Seeds are collected wrapped up for next year .. some given to birds. Thank you for sharing the sunflowers to promote awareness. You spread smiles as well as awareness. x

 

To learn more about the Friends of Vale Park, visit their website below.

Donations to The Big Sunflower Project

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This week, we have become aware that some people have been trying to donate to The Big Sunflower Project but these donations have been going instead to an organisation called 38 Degrees.

After an investigation, 38 Degrees traced one of the donor PayPal reference numbers to their Bee Seeds Campaign and specifically to the donation page for this campaign.

The donation has now been refunded and the donor has been notified by 38 Degrees that they now know this was not intended for them. It is hoped the other donations will be refunded shortly.

38 Degrees have also taken down their order page which was posted on the WOW Free Stuff website – this appears to be where confusion has arisen, as both the 38 Degrees campaign and The Big Sunflower Project were featured there at the same time.

If you think you have donated to The Big Sunflower Project but have not received your sunflower seeds, you may have been affected too and should check your PayPal receipt to see where your donation has gone.

If you find you have donated to 38 Degrees, you should contact them quoting The Big Sunflower Project in any correspondence. You will need to provide a screen shot showing your donation receipt and the reference number for your donation, in order to receive a refund.

Please note, if you are wanting to donate to The Big Sunflower Project, there are only two ways to do this, either:

The Big Sunflower Project will not receive donations that use any alternative donation facility, so donors will not receive sunflower seeds from The Big Sunflower Project. However, the project is happy to send seeds to anyone who donates in either of the ways detailed above.

Conrad and the sunflower

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In 2013 an email arrived out of the blue, it told the touching tale of a child born with myotubular myopathy and a sunflower. Thank you Emma for taking the time to write, your kind words and for sharing lovely story with the world.

After trying for some time, last July, my husband and I found out I was pregnant. Earlier the same year my husband and I had some stumps ground out of our lawn leaving a few substantial piles of dirt in the yard. In one of the piles a sunflower grew – seeming to come from nowhere. We enjoyed the sunflower all summer and into the fall.

When our precious Conrad was born he was not breathing and was floppy. Long story short, after genetic testing we learned that Conrad had myotubular myopathy.

In my frantic search for information about Conrad’s condition, I came across the Information Point and read about the Sunflower Project. In that moment I knew that our mysterious sunflower was God’s way of telling us that He already knew what Conrad had and that he was preparing the way for Conrad’s life even while he was being knit together in my womb. Even when it seems that nothing is fair and the world does not make sense, God is in control and He has a plan for our darling little boy.

I am learning already that boys with MTM and the families who love them are very special people. Thank you so very much for all the work you have done to raise awareness about centronuclear and myotubular myopathy and for being here when I and my family needed you.

Arlene: Germany

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In May 2016 ZNM-together strong e.V. and the Myotubular Trust held a three day Family Conference for people affected by centronuclear and myotubular myopathy in Niedernhausen near Frankfurt. (For more information about the organisations and the conference visit the ZNM and Myotubular Trust websites. You can also read about the conference in The Information Point newsletter Our World).

arlene

Arlene, one of the organisers of the conference, requested seeds to give away as a small gift at the end of the 2016 conference, saying:

The last conference day was also Mothers Day and we thought, that it would be nice to hand a small present to all the mothers and families at the conference. Sunflower seeds from The Big Sunflower Project seemed to be just the thing to share.

Toni sent me 50 packages with seeds and we wrapped them with some ribbon a piece of chocolate and the business card. It was a great success and from our conference the seeds travel to several European States, to the US and Canada.

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My mum and I planted our seeds right after the conference and all but two seeds became wonderful flowers. We reserved this one planting pot to be our ‘sunflower pot’, adding new soil we use it every year. In fall we harvested lots of seed. There will be enough to not only replant seeds in our sunflower pot but to also plant some outside where they will be a wild life hiding place in the summer and a feeding place in the winter.

Milford Pre School Plus

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Milford Pre School Plus took part in The Big Sunflower Project in 2016. Below school teacher Sarah shares her story about taking part in The Big Sunflower Project.

I feel passionate about children being involved in gardening and learning all about growing from an early age, it’s something they are naturally interested in and so learn new skills quickly.

These skills include carefully planting one sunflower seed, watering it and potting on so we can give the roots more room. We then plant them out into our lovely allotment where they join lots of fruits, vegetables and wild flowers, all grown by our young children.

Our children love growing sunflowers, as they grow fast and the flowers are beautiful. We also enjoy picking out the seeds to feed our resident sparrows.

I was keen to support The Big Sunflower Project, as we are lucky to have supportive parents who take on experiences they can share with their children and grow them at home. I sent information with each seed in its pot to enable parents to read up on the project too and we had lots of photos of the sunflowers growing at home to share.

milford-pre-school-allotment

milford-pre-school-sunflower

Charlene

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I took part in The Big Sunflower Project in 2016. I was quite excited when I received my seeds. I planted them in pots and waited. The pots were in a position of full sun at all times and I enjoyed watching them grow.

They grew so tall and I wasn’t the only one who enjoyed them, the bees and butterflies did too. I kept them in pots through the whole growing process as last time I grew some sunflowers, I moved them from the pots into the garden and the ants ate them.

I persevered as I knew that growing the sunflowers were for a good cause. To create awareness or the rare neuromuscular conditions called centronuclear and myotubular myopathy. I helped raise awareness by asking all my friends to like the Facebook page also. I would definitely grow them again.

charlene

Natalija

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Hello! My name is Natalija! I am from Croatia.

My son Ante is 7 and he suffers from congenital muscular dystrophy. Regarding his condition he stays at home on home health care.

In order to make a special atmosphere for him I decided to decorate terrace with plants. Plan was to create an outdoor space as relaxing ambiance. When I saw The Big Sunflower Project it was like that special moment in your life when you recognize the real thing.

I have never grown sunflowers before but suddenly I had a great wish. It didn’t look challenging. When the sunflowers bloomed it was pure magic. The whole family like it. It is an enjoyable experience and I will definitely grow it next year.

natalija

Herne Bay Infant School

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Herne Bay Infant School took part in The Big Sunflower Project in 2016. Below school teacher Lois shares her story about taking part in The Big Sunflower Project.

I first heard of the project in 2015 and really wanted to participate to raise awareness of centronuclear and myotubular myopathy.

We had a circle time with the children to celebrate that everybody is different and that’s what makes us an individual.  We then explained that some people need extra help and support from others.

We discussed things that we are grateful of such as speech and being mobile, which sometimes we take for granted. We celebrated how we are different from each other but also our similarities.

The children helped plant the seeds and we discussed what they needed in order to grow, the children loved the responsibility of watering the sunflowers and monitoring their progress by measuring and talking about the differences.

Sunflower grown at Herne Bay Infant School.

Sue (Bournemouth)

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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

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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