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Awareness Week 2018 - Deian's Story

23rd October 2018


Deian's Story...

At our second scan the sonographer frowned and looked closer at the screen. I asked her if everything was alright. It wasn't.

My baby's ventricles were larger than they should be and there was some shading at the base of the spine. My husband and I were asked to wait for the obstetrician in what was effectively a storeroom. I remember saying to my husband that it didn't sound good if there was a problem with the central nervous system.

The obstetrician finally came to see us. He asked us if we had heard of spina bifida. He drew us a diagram and gave us a leaflet and told us to contact ASBAH - now SHINE. Ten and a half years on and we are the permanently proud parents of a funny, determined and ambitious young footballer. SHINE have supported us through all of it and we are ever so grateful.

SHINE have been amazing. Our main contact has been Sharon Saville who has visited us regularly since I was pregnant. Sharon has given us an enormous amount of support over the years- both emotional and practical. She has helped us with forms for DLA and the blue badge applications.

The whole process seemed incredibly daunting but Sharon went through it all with us and was so understanding at how upset we were with all of it. She's come to meetings at the school with us to make sure Deian gets the support he needs to reach his full potential. 

Deian enjoys being as active as possible. We have been very pleased to welcome Sharon when she has kindly visited a Riding for the Disabled lesson, and a disability football tournament. Everyone had a great day at the football fundraiser that Sharon organised along with Jade from the Sussex Disability League.

Sharon has supported the whole family. We also have a daughter, Cerys, who is four years older than Deian. She's a fantastic big sister, very sensitive to Deian's additional needs. Sharon has worked with Cerys's school to ensure that their students are taught respect and understanding to those with disabilities.

Sharon is always genuinely delighted to see Deian and Cerys. She really makes us feel like we are we are doing ok.

We have also been helped by Shine's medical advisors. I made many calls to them when I was pregnant. We had an excellent neurosurgeon and all the hospital staff were amazing with my son. I was very nervous when I was informed I would have to have an elective Caesarean.

I was confident that my son was in the best hands at Kings and felt a little selfish worrying how I would cope with the operation. Eventually I phoned SHINE and Gill Yaz talked me through all of it and that really helped. It was so reassuring knowing that Gill and Robin Barnatt were just a phone call away. They've answered so many questions, like whether Deian could fly in an aeroplane without risk to his hydrocephalus shunt. Gill has even been to support families at the Spinal Cord Disorders clinic at the Evelina.

SHINE's support really has been invaluable over the years. We have also enjoyed meeting other families at various social events. I would have been lost without them.


If you've been affected or inspired by Deian's story, you can help Shine to support more people just like him 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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