Spina Bifida Awareness Week 2021 - Harper's Story

Harper's Story...

"Being connected with other parents through a Shine WhatsApp Group has meant I am now in touch with others that can understand my situation."

I didn’t hear about Shine until Harper was 18 months old. It was a scary dark place at times. I had doctors telling me different things and at times nothing made sense.  

More awareness of spina bifida is needed as I didn’t know anything about the condition until I had Harper.  

Initially becoming members of Shine meant I had somewhere to go and have the condition and the different types explained to me. It felt so much better as the Shine information helped us understand the condition and I didn’t feel as in the dark. 

If our Shine Early Years Intervention Worker, Denise, doesn’t know the answer to my questions she will ask another member of the team to contact me. There is always someone there to help us. For example, we would never have had support from a physio if not been put in touch with Shine’s Physio, Bronwen. Currently we are going to a tribunal for mobility allowance and Shine’s Disability Benefits Officer, Bryn, has given me a wealth of information that has been invaluable.  

Being connected with other parents through a Shine WhatsApp Group has meant I am now in touch with others that can understand my situation. During a recent 5 week hospital stay it was great to actually get to meet two other mums that are a part of the WhatApp Group and chat with them. Being in hospital is a lonely time, and with Covid little interaction allowed and no visitors. It was nice as I was able to chat with these other two mums on the ward which meant I felt a lot less isolated.  

I have kept in touch with these mums and we can offer each other additional support especially as one has to catheterise her child every 3 hours like we do.