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Poppy's Story - Christmas Campaign 2017

    • Poppy Christmas Campaign

“As a mum of a child with spina bifida, I know from personal experience the daily challenges facing a child with a condition that affects learning, movement and health, and the amazing difference good support at school makes.” (Sam Gardiner, Poppy’s mum)

Poppy lives in Wales with her mum and dad, Sam and Daniel, older sisters Lydia and Paige, twin sister, Connie, and cheeky King Charles spaniel, Alfie. Mum Sam shares how having a daughter with spina bifida has transformed their lives...

"I found out that Poppy had spina bifida when I was twenty weeks pregnant. I was in shock. I couldn’t eat or sleep. I withdrew and felt hopeless, as if I’d failed.

My family were very supportive: “You can get through this!” My mum found Shine’s number and phoned Shine’s Regional Coordinator. Sian chatted everything through with us, including practical things such as catheters - it was so reassuring. From that day something clicked; I knew it would be ok, though I still didn’t tell anyone outside the family for ages!

I went along to a Shine Sêr Bach (Little Stars) meeting. It was really helpful to see what to expect. I felt clued up, so when Poppy was born I was prepared. It’s hard to explain, but it had a massive impact on the family. I don’t know how we would have coped without this support.

At first, when we had to dress Poppy’s back or change her catheter, we tried to keep the children away. We walked on eggshells. Lydia was upset and scared as she was old enough to understand... But now we involve them in everything - it’s so much better - they have adjusted well and it’s ‘everyday’ now. Connie even asks why she can’t have a catheter!

We rarely have a clear month when Poppy is fully well. There are always hospital stays and clinic visits - one day the neurologist, another an ultrasound scan, another something else. We live an hour away. It would be so good to have specialist clinics, as in other parts of the country, to save the cost and stress of travelling back and forth, the parking and such.

For new families, try to stay positive. There will be down days but plenty more up days. Your child may have spina bifida or hydrocephalus, that’s a condition they happen to have - it’s not what defines them. Let them try new things - they may just need to do it a different way.

Whatever you do, don’t hide away - speak to someone. I met a lady recently whose 12-year old daughter has spina bifida and never had any advice in all that time. Now we tell everyone...

As a mum of a child with spina bifida, I know from personal experience the daily challenges facing a child with a condition that affects learning, movement and health, and the amazing difference good support at school makes.” 

......

Shine’s Christmas Campaign will help teachers unlock potential in children like Poppy. At school, Poppy wants to do the things her twin sister Connie can. But she finds it hard to run around and make new friends. She struggles with words, and panics when trying anything new… She often feels very small and alone.

Shine is creating life changing resources and support for children with spina bifida and hydrocephalus, their families and the professionals who work with them.

We help teachers to find creative ways to help boys and girls like Poppy to learn and gain confidence, by breaking tasks into easy steps, using colour to sort information, extra time for tasks, and support to catch up after hospital stays.

If you've been affected or inspired by Poppy's story, you can learn more about the aims of the project and make a donation to support this pioneering work by visiting our Just Giving page before midnight Sunday 31st December 2017


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