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Awareness Week 2018 - Daisy's Story

24th October 2018


Daisy's Story...

In August 2016 our daughter Daisy was diagnosed with Spina Bifida and hydrocephalus during our 20 week scan. During that scan we were told Daisy would be in a ‘vegetative state’ and paralysed with no quality of life. It was suggested we terminate the pregnancy. I remember being in total shock and like the whole world had come to a grinding halt. To hear someone suggest you terminate a baby who you love with every inch of your being is indescribable.  We were sent home from that scan with 2 leaflets, one on termination and one for SHINE. 

The next few weeks felt like a complete blur, everything we were told at the hospital or looked at online or researched was so negative and led us to believe the consultant was right and our baby would have no quality of life. This was until we spoke to SHINE... they were understanding, sympathetic, patient and a tremendous support and the first time we heard anything positive! Alongside the practicalities and what we were likely to expect having a baby with SB and hydro they told us about many babies born with SB and how they go on to lead happy, normal lives. They went out of their way to help and we felt fully supported and listened to. They helped us adjust to the news and for that we owe them so so much! 

They’ve continued to be a great support through information, events and are always there to answer any questions we have. We’ve made many friends with other SB and hydro families through the lovely family days out arranged by them. In July 2018 we took part in a sponsored walk to raise funds for SHINE. With the help from our local physios we arranged a surprise for everyone and Daisy used a frame to take some supported steps. We raised £1600. 

Daisy’s currently weight bearing and we are very hopeful she’ll be taking steps on her own in the future. She’s just been signed by Zebedee Management who are a specialist model and talent agency representing people with disabilities. She’s just perfect and we can’t imagine life without her. She lights up any room we enter and is our absolute hero. She’s so happy and has the best quality of life anyone could wish for! I can’t wait to see what the future holds for her.

We are so grateful for the service SHINE provide and the support they give to families like ours. The support is fantastic and I just know SHINE will be by our sides as we continue on this journey with Daisy. Thank you for everything from the bottom of our hearts.


If you've been affected or inspired by Daisy's story, you can help Shine to support more people just like her by donating £5. Simply text DOIT05 £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 772 new members in 2016, that's a total of £3860 before we've even began to deliver services. Your small donation could make a big difference.

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