Lola's story

Lola's story for Rainbows Hospice for Children and Young People

Six-year-old Lola was a twin who was born premature. Sadly, her sister Amelia died a few hours after birth.

After spending three months in hospital, Lola began suffering from seizures and was diagnosed with West Syndrome and Quadriplegic Cerebral Palsy, meaning she has difficulty controlling her limbs and has frequent seizures.

Lola has been visiting our hospice for the last five years and her aunt and uncle, Amanda and Gary, who are Lola’s guardians, says our charity is so important to their family. 

“Lola is totally reliant on others for every aspect of her life and five years ago Rainbows became our lifeline,” said Amanda. “Lola has multiple spasms a day. Some days are better than others. Some days she can just scream and we think that’s when she is in pain. She is like a new-born really, there is no conscious movement and she can’t talk.

“Lola doesn’t really sleep either so when she goes to Rainbows, it enables us to have those days to recharge while knowing she is having a good time there. We miss that. When she can go to Rainbows, we know she is in the safest of hands and she loves it being her time. I don’t know how she knows where she is, but when we go through the doors, she just lights up. Her favourite thing is swimming in the Hydrotherapy Pool.”

During the Covid-19 crisis, Lola and her family have benefited from the At Home Support Service we offer. The service enables one of our Hospice Care Assistants to go to a family’s home for a visit. 

“Gemma, our Care Assistant, comes to the house every week. Lola can hear Gemma’s voice and she just loves it,” said Amanda. “It has also been lovely getting to know Gemma a little bit more and for her to see what Lola is like in her home environment. It is a bit of normality for us for a couple of hours and consistency for Lola. 

“We just don’t know what the future holds for us. To begin with, doctors said she wouldn’t live beyond the age of two and each time she reaches a milestone, it extends. They just don’t know. Every day is a bonus for us. Last year, we didn’t have many hospital admissions but in 2018 it was awful as Lola had pneumonia a few times. But she is so resilient.

“Rainbows is somewhere that I know that no question is silly and I can call at any time of the day or night. They help us so much and I really hope people will now help them so they can continue to provide an amazing service to so many families.”

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