Your stories

Hydrocephalus Awareness Week 2021 - Gracie's Story

5th March 2021

 

Gracie's Story...

"I appreciate Shine for all the valuable support I’ve received as a new mum of a baby with hydrocephalus and spina bifida."

What was life like before you received support from Shine?

"Before contacting Shine I had very limited information about hydrocephalus. All I was told is that Gracie has fluid on her brain, I didn’t understand anything other than that. I was told she needed a VP shunt."

How has Shine supported you?

"The hydrocephalus nurse encouraged me to join Shine and provided me with some Shine resources. I am glad I joined, and I appreciate Shine for all the valuable support I’ve received as a new mum of a baby with hydrocephalus and spina bifida. 

My support and development worker helped me get a better understanding of hydrocephalus, and supported me to apply for some money to help with travel costs to and from the hospital. She helped me fill in Gracie’s DLA form and a housing grant which was successful. I’ve found the Little Stars Facebook group and my local WhatsApp group helpful and found valuable peer support on the groups."

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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.

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