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Spina Bifida Awareness Week 2021 - Rosa's Story

17th October 2021


Rosa's Story...

"We are thankful for Shine’s support in helping us be prepared for this big transition in all of our lives."

Rosa was born with spina bifida and hydrocephalus and Shine staff have been involved in supporting us since before she was born.    

Like every parent with a child with extra needs, we knew that we would need to be proactive in getting Rosa the support and help in school that she needs to give her the best start in education.   

When Rosa turned two, we began to navigate the process of getting her a Statement of Special Educational Needs.  Shine helped us through the whole process and without their support we wouldn’t have known where to start. We found the paperwork very daunting and the process of looking back over what had happened to Rosa emotionally draining.  Having to put all of her complications and surgeries on paper was an emotional process, and we were thankful that our Shine Support and Development Worker was available to walk us through the process and help us practically with getting the parental statement completed. We are delighted that Rosa’s Statement of Special Educational Needs entitles her to full-time, one-to-one support in school. Our Shine Support and Development Worker has been able to deliver training to Rosa’s teacher and classroom assistant on her conditions. Knowing that the staff that care for her every day fully understand Rosa is really reassuring.    

Last June Rosa’s Paediatrician advised us to work on getting her into a better sleep routine so that she could get the most out of her school experience. Due to Rosa having so many surgeries and admissions to hospital, going to sleep and staying asleep has always been something that she has struggled with. We reached out to our Support and Development Worker to see if sleep was an issue for other children with spina bifida and we were offered support from Shine’s Sleep Practitioner, Denise. Denise took the time to ask questions and listen to our history with sleep and she gave us some excellent practical advice. To our delight, Rosa is now happy to go to bed and falls asleep by herself at bedtime, and stays in her own bed all night long! This support from Shine has made a massive difference to our lives; Rosa is no longer distressed going to bed, and we are all getting a full night's sleep, which is so important now that Rosa is going to nursery school.    

Since the start of September, we have watched Rosa thrive as she started nursery school and it has been an amazing experience. We are thankful for Shine’s support in helping us be prepared for this big transition in all of our lives. 


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