Someone to turn to - Stephanie's story

"Different things happen at each stage of my daughter’s life. Whatever the outcome of any changes, Shine is there to help, and they understand."

"My first contact with Shine was when I was 16 weeks pregnant. I found out that Robyn was going to have spina bifida, hydrocephalus and congenital kyphosis.

I spoke to Chris from Shine all through my pregnancy. I just needed someone to talk to. Shine explained everything about spina bifida and hydrocephalus, and they sent us information to. It helped a lot and gave us more understanding of Robyn’s diagnosis. We stayed positive through the whole pregnancy.

As a parent, I wish there were more toilet facilities suitable to catheter my daughter. She has her catheter every 2 and a half hours, and it’s one of my biggest struggles; when we’re out there is hardly anywhere to go. Now that she is getting older, it is getting harder to find facilities. She won’t fit in the baby changer much longer. Shine gives me a sense of belonging, they are a charity that understands all we go through.

We know that Shine will always be there for anything we need to know, and we have someone to turn to. I like being in the WhatsApp group too. We’ve had information about everything throughout our journey. Different things happen at each stage of my daughter’s life. Whatever the outcome of any changes, Shine is there to help, and they understand.

The hospitals only really tell you the negative things, but Shine explains everything. There is no one like Shine, they do so much. Without them, we would not have learned about our daughter’s conditions. If I didn’t have Shine, I would have had no one around who really understands my daughter."

Thank you to Stephanie for sharing your story.