Your stories
7th March 2022
"After 3 years I am still learning stuff, I always feel more confident to support Lilly-Rose after speaking to someone at Shine."
"Lilly-Rose was 2 when she was diagnosed with hydrocephalus - it was such a hard time. I had never heard of the condition, I didn’t know what was happening. I was upset and scared. I felt I couldn’t explain to family members what was wrong with Lilly-Rose or what was going to happen, I just didn’t know what to say to them.
I received a Shine leaflet from our specialist nurse at Sheffield Hospital and we became members online immediately."
"I was sent hydrocephalus information in the post, it was overwhelming at first but my mum and I sat down and went through the pack. Someone from Shine called me to introduce themselves too. It helped so much to know I could ask them anything. Having someone at the end of the phone has made a big difference to me, if that person doesn’t know someone else will and they get back to me. I don’t feel alone or isolated. Knowing I can call and talk things through makes a huge difference to me, and I feel listened to.
After 3 years I am still learning stuff, I always feel more confident to support Lilly-Rose after speaking to someone at Shine. It’s also great to know the Health Team are there, they have time to support me always explaining things better to me, with patience.
I am also very grateful to Shine for introducing me to Nina at SHASBAH - I benefit so much knowing I can meet up with families local to me.
If you've been affected or inspired by our member's stories, you can help Shine support more people just like them by making a donation today. Your donation will help Shine support our members live life to the full and provide vital information for new members at a crucial stage in their lives.