Maisie

“If Maisie wakes up in the morning, it is a good day.”

Maisie Wray (17) has Pontocerebellar Hypoplasia Type 2, a rare condition that affects the development of the brain, and Cerebral Palsy.

“We have been told that it is a possibility she will go in her sleep, so to see her smile in the morning and hear her laugh, that is the best gift you can have,” said her mum, Lisa.

“We knew something was wrong when Maisie was six-weeks-old. Maisie was our first baby, and her dad, Nick, and I were very excited, but it became such a stressful rollercoaster. We were trying to be a new mummy and daddy and live our daily life, but she had test after test and minute by minute everything was changing.

“The doctors tell you things, but you don’t believe what you are hearing because you don’t expect it to happen to you. It was such a lot to take in, and we didn’t fully understand. I can’t really remember what happened at the time as it was all a bit of a blur.”

Daily life is hard. Maisie is unable to do anything for herself and some nights, Lisa and Nick don’t sleep at all. As she gets older and bigger, it is difficult for Lisa to lift Maisie and get her dressed.

The family discovered Rainbows and said our charity has been a great support, not only for them and Maisie but for their other children, Harry (12) and Olivia (6).

“Rainbows is just great. Maisie has had a stay on her own and we have also stayed for a short break as a family,” said Lisa.

“It gives Maisie some freedom and time with other young people. She is happy and settled at Rainbows. When we tell her she is going to Rainbows she smiles, and she is always happy when she is there.

“For us as a family, we have never been able to do the things other families can do. We have always been driven by time and medication and food and changing. Maisie can’t do anything for herself and if she has a bad night, it impacts the next day.

“Rainbows also helps us to do things with Harry and Olivia, that we wouldn’t normally be able to do.”

Lisa describes Maisie as so happy and smiley and although she is non-verbal, she has her own little sounds and loves a giggle.

“She is just brilliant,” said Lisa. “It is difficult because I can’t help thinking things like, this year she would have done her GCSEs, left school and had a prom. There was a bit of me that thought, that is what Maisie should have done.

“But we live for each day. We were told that she was life limited and might not live past 10. She is now 17 and every day she brings us joy and laughter.

“Rainbows is an incredible, incredible cause and so valuable to us. We hope people will keep supporting the charity so it can continue to give babies, children and young people what they need.”

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