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Poppy's Story - Awareness Week 2017

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"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 for Wales and SW England. 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."


If you've been affected or inspired by Poppy's story, you can help Shine to support more people just like her by donating £5. Simply text WEEK17 £5 to 70070, your donation will help pay for an information pack containing vital information for new members at a crucial stage in their lives.

Shine welcomed 692 new members in 2016, that's a total of £3460 before we've even began to deliver services. Your small donation could make a big difference.

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