Mother creates business in memory of her daughter

A mother whose three-year-old daughter died of a rare genetic condition in February has set up a new business venture in her memory.

When Maralise Van Wyk was born, her parents Becky and Jenico, of Nottinghamshire, knew there was something wrong as their daughter struggled to feed and wasn’t growing. At six weeks old, an MRI scan revealed there were problems with part of Maralise’s brain.

Then at 18-months-old, Maralise was finally diagnosed with Pontocerebellar Hypoplasia, a group of related conditions that affect the development of the brain. At the time, there were only 12 children worldwide who had the same condition and unfortunately, Maralise was at the severe end of the spectrum.

Becky and Jenico were told the devastating news that their daughter would probably not live past five-years-old.  As she grew older, Maralise didn’t sleep, was unable to move and was tube fed. She was also on more than 20 medications a day and suffered from painful spasms. Sadly Maralise died on February 26, 2013 in hospital.

“She was the most beautiful little girl and had the most gorgeous smile,” said Becky. “She couldn’t walk or talk but the life lessons she taught me in her three years were forever lasting. She has taken me on a completely different path. Everyone loved her. To see your little one in so much pain and not be able to do anything about it was awful. We felt so hopeless. It was the best and most difficult three years of our lives.”

To keep Maralise’s memory alive, Becky and her friend, Ashleigh Drew, have set up a business venture called Maralise’s Magical Stories. Becky and Ashleigh create sensory packs to allow children with life-limited conditions to enjoy songs and stories in their own way.

Becky said: “Maralise couldn’t access a story in the way a healthy three-year-old would. I put little props together to create different senses in the story. It is wonderful to turn a story in to 4D; Children can hear, smell and touch the experience.

“I decided I wanted to do this for other children. It is Maralise’s legacy; I need to do something with all that she taught me. If we can make one child smile then it will be worth it.”

Maralise started visiting Rainbows when she was nine months old for respite care. This year, we are celebrating 20 years of care and to commemorate our birthday, we want to raise an extra £100,000 over the year to help fund more children’s nurses.

Becky added: “The support we had from Rainbows was incredible and the respite care was invaluable.  Coming to Rainbows was a little piece of heaven, my life was normal at Rainbows. I wasn’t a nurse or a physio, I was a mummy and we could be a family.

“When she died, Maralise was taken to Rainbows and she stayed there until her funeral, it was like we were taking her home. I couldn’t bear the thought of my little girl being on her own so at Rainbows I knew she was with her second family. For us, it is not possible to put in words what it meant to us to have Maralise at Rainbows. I honestly don’t know how I would have coped without the team.”

Maralise and her family have carried out fundraising for Rainbows over the years and in time, Becky hopes Maralise’s Magical Stories will benefit others at Rainbows.

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