Awareness Week 2018 - Maryam's Story

Maryam's Story

I am a mum of three children, two older boys and the youngest a daughter, Maryam, who has Spina Bifida and Hydrocephalus.  I joined Shine more than two years ago while still pregnant with Maryam. I found out about my daughter's diagnosis during the 20 weeks scan and was referred to attend a specialist clinic in Nottingham. During my first scan in Nottingham I was given a leaflet with Shine information and I decided to contact the charity. 

Maryam's diagnosis sounded very scary and pictures on the Internet were terrible. I was looking for some help and support, as I needed to see how children with Spina Bifida looked. When I first met with Sharon Lapsley and Robin Barnatt they changed my expectations completely. They explained everything about the day to day life of somebody with spina bifida and hydrocephalus and what to expect from the very beginning after my daughter was born.  They said it is ok, it is not all bad news. 

Maryam was born in May 2016. She was operated on the next day to close her back. She recovered well and we were back home in 7 days. Sharon came to visit us at home. It was lovely to see her and show her my little girl.

Maryam is 2 years old and Shine has been by our side all the way since we have joined. They helped us when Maryam started catheterisation and I needed support on how to deal with it. I had help from Shine when I needed special travel insurance for Maryam. I have gained a lot of information and advice during family events and the 0-5 parent group which I enjoy attending every month. Shine has helped me to apply for DLA and carers allowance. 

It would be difficult without Shine's support.  Shine is my first point of contact when something goes wrong and I need help or advice. If Sharon can't help she will tell me who can and it is important when you have a lot on your shoulders.

Special needs parenting is not an easy task. Things can go wrong at any time and knowing that there is somebody by your side is very valuable. Shine has great members of staff and volunteers who are very supportive and I love to see them every month when I come for the parent group. 

Shine's services are amazing and crucial for Maryam's future. I hope that Maryam will grow up to be a confident person, regardless of her disability. With the support of Shine I feel that will happen. If she needs any other help I know we can access Shine for support or they will help us find other support. That gives me confidence.

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If you've been affected or inspired by Maryam'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.