Winnie's Story

Winnie with her mum at Rainbows Hospice for Children and Young People

Winnie, who has battled against the odds with a rare brain condition.

Winnie has Pontocerebellar Hyperplasia (PCH) Type two. The neurodegenerative disorder means she is significantly delayed in her developments and has the characteristics of a six-month-old baby. 

For mum Jade, who is Winnie's full-time carer, and dad Ellis, life is often extremely difficult. Last year, the family discovered Rainbows and we have provided Winnie with much-needed supportive care and attention, while offering respite for Jade, Ellis and the family. 

“For us, Rainbows is just amazing,” said Jade. “Whenever we visit, we just don’t want to go home. Everyone is so welcoming and caring and always has our best interests at heart; not just for Winnie, it is inclusive for all of our family and we feel at peace there.”

Jade and Ellis first feared something was wrong with their daughter at 10-weeks-old when she started to develop twitching movements following each feed. 

“We were told initially she would grow out of it but the twitches became more frequent, lasted longer and Winnie would get distressed,” said Jade. “She was taken to A&E at Derby Royal where ECGs and an MRI were performed. 

“Following the tests, we were given the diagnosis and told that ‘Winnie may never be able to walk or talk and that quite often children with PCH don't survive past infancy’. Hearing those words about your 10 week old first born child is heart-breaking. There was so much to try and understand at once and of course, we were devastated.

“Our world had just fallen apart. I remember going outside to get some air and feeling like I wasn’t there, that this wasn’t happening to us. It was all so strange and surreal.

"The best advice and most heart-warming words the doctor gave us were 'Take Winnie home and love her' and that's just what we have done. This is our normal. Winnie was our precious gift and we had to do everything we could to make her life the best it can be. There was no point wallowing in self-pity, wondering 'why us?’ it does no one any favours. We had a beautiful new-born daughter who needed us.”
As part of her condition, Winnie suffers from frequent dystonic storms, a movement disorder where her muscles contract involuntarily. “When she has lots of movements, that is her way of telling us she is in pain,” said Jade. “Winnie’s condition means she looks like, and has the development age of, a young baby. She can’t sit, walk or crawl. She is visually impaired and she can’t talk and doctors are unsure if she ever will. 

“But she is so very happy, she smiles a lot and has the most wonderful laugh; and she loves Rainbows. She has the biggest blue eyes, the most contagious smile and everyone just wants to cuddle her. Anyone who meets Winnie instantly falls in love with her.

“I have always found it difficult to let go and allow someone else to take control but I trust the staff at Rainbows so much, it is great and it enables me to get some respite. Winnie loves the Multisensory Room and the Hydrotherapy Pool, in particular.”

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