Brave, funny and kind with a memorable smile and the most infectious laugh.
These words unequivocally sum up Perthshire girl Ruby Stewart, who died at the age of just six from a rare tissue cancer called rhabdomyosarcoma in January 2020.
In her name, parents Claire and Andy Stewart from Inchture fundraise tirelessly for research into children’s cancer, and their most recent project has been creating a magical children’s Christmas picture book inspired by Ruby’s final holiday to Lapland.
Be More Ruby
Claire and Andy founded Be More Ruby to raise awareness and funds for research into rhabdomyosarcoma.
In 2019 they set up a named fund called Super Ruby’s Rhabdo Raiser with Children’s Cancer and Leukaemia Group (CCLG). All money raised by Be More Ruby goes into this fund.
In three years, they have raised more than £200,000 and this has been a combination of fundraising initiatives as well as people supporting the charity through sponsored activities such as The Kiltwalk or organised runs.
“When your child’s not here anymore, what do you? How do you make sure that their life meant something?” Claire says, as I chat to her and Andy over video call.
“And it’s not only her family and close friends that remember her – Ruby was here and I want everybody to know she was here. It’s important.”
Just four years old
Ruby was diagnosed with stage four alveolar rhabdomyosarcoma in September 2017. She was four years old and had just started school.
The only sign that there was something wrong with Ruby prior to her diagnosis was a subtle swelling in her left leg.
Scans revealed a tumour and, within weeks, she was unable to walk or stand due to the growth impeding her spinal cord.
Treatment began immediately and she received nine cycles of chemotherapy and six weeks of radiotherapy. Ruby started to regain the feeling in her legs and gradually learned to walk again.
By December 2018 her scans were clear, but in February 2019 she complained of a sore back. Scans revealed the devastating news that she had relapsed.
She restarted chemotherapy, but the tumour was spreading. It paralysed Ruby from the waist down and caused her terrible pain.
A funny, happy, amazing little girl
She died peacefully on January 3, 2020, the day after her father’s birthday and just two weeks before her seventh birthday.
Ruby’s parents describe her as “one of the funniest, happiest, most amazing little girls you could ever have the pleasure of knowing” and Claire also jokes about how she could be a formidable character as well as a complete adrenaline junkie.
“She was very stubborn and could be very single-minded. If she decided she was doing something, that’s what she was doing,” Claire goes on.
In spite of her years, Ruby possessed the rare gift of being able to stay positive and continue putting others first. Even during her most difficult and painful times, she made a huge impression on everyone she met.
Just before Ruby passed away, Inchture resident and writer Kevin Anderson created a children’s book called The Unicorn with the Ruby Horn with local illustrator Eileen McGinley. It was inspired by Ruby’s love of unicorns.
The story wove together unicorns, being different, acceptance and diversity and raised more than £15,000 for CCLG. As Ruby’s health deteriorated rapidly in the weeks before her death, the book brought the family fun, focus and friendship.
A trip to Lapland
It was also around this time that Claire and Andy took Ruby on a trip to Lapland to visit Santa and his reindeer. A story that went on to inspire the second Ruby book, The Unicorn Who Saved Christmas.
The family had originally been planning the trip through a wish-granting children’s charity but were then told it would not be possible because Ruby was paraplegic.
Claire and Andy decided to fundraise independently so they could take Ruby on their own. They were determined their daughter should make it to the North Pole to meet Santa. Less than three weeks after returning from Lapland, Ruby passed away.
Claire and Andy reflect on the time as bittersweet. Understandably, it wasn’t the happiest time of their lives – but it was also very special.
The right thing to do
“It was amazing and absolutely the right thing for us to do with Ruby at that time, but it was also quite difficult because she was so poorly,” Claire recalls.
“I think 95% of the memories from that trip are really happy ones and the rest was just stuff we had to deal with – and we did that.
“For the majority of the time we were there she was well and she was really happy and she did enjoy it. I honestly think the sledging was what Ruby loved the most. She also loved her sledge ride with the dogs.”
Her parents add that even though she was profoundly unwell, Ruby was still up for fun and larks.
Andy recalls with a smile: “Where we stayed, they had a huge rubber ring and I was in this with Ruby flying down the hill in the snow, holding on to her and wondering where it was going to go. When we got to the bottom she was in hysterics because she was loving it so much.”
The second Ruby the Unicorn story
Inspired by the trip and wanting to do something to lift the family’s spirits, another friend and neighbour, Derek Sword, set about writing a second Ruby the Unicorn story.
This time, Ruby visits Santa in Lapland and helps him deliver presents to children when one of his reindeer becomes unwell. It sums up Ruby’s generosity and empathy perfectly.
On the off-chance, Derek approached the agent of TV personality, actor and author Stephen Fry to ask if he would be willing to lend his voice to an audio version of the story. To his surprise, a response came back the following day agreeing to do it.
The audiobook was released last Christmas, with funds going to CCLG.
Andy says: “His voice is so iconic and so distinctive. You know it’s him. It makes it really special.”
Buoyed by the public’s reception of the magical tale, Claire and Andy approached Eileen McGinley to ask if she would be interested in illustrating another Ruby the Unicorn book.
Claire reveals: “I honestly thought she would say no because this is a much longer book and a lot more work, but she was totally on board with it and wanted to run with it. She’s just amazing. She pulled the whole thing together and organised the printing.”
The new book was released last month and is available to buy from local businesses as well as pop-ups and via the CCLG website direct.
Claire and Andy are hugely grateful for the support of everyone who made the book possible and continue to spread the word about Ruby, her ethos and the importance of fundraising for research into better treatments for rhabdomyosarcoma, which receives only a tiny proportion of funding globally.
“We feel the best place to put our money is in research that will actually make a difference,” Claire says.
And Ruby’s infectious personality continues to inspire with the motto “Be More Ruby” ringing proudly in all her parents do.
‘Life is precious’
“Having lost somebody so vibrant and so full of personality, life, hope and happiness, life can be so difficult and so hard, sometimes – but Ruby never saw it like that. Life is precious and people don’t realise,” Claire says, visibly recalling their daughter’s unique courage and spirit.
“It can be hard to remember that, and to live your life with that motto in mind. It was just really to say, try to be a bit more like her because your life will be better.”
Andy reflects: “It’s the positivity she had – she took everything in her stride. On one of her last days at school the teacher said she was wanting to help others.
“That was just Ruby. She worried about other people and not the fact that she was in a wheelchair and having to struggle to get to school. That was her.”
Claire adds: “She had a huge amount of empathy. It’s so strange but it was almost as if she was born to be that patient. Born to be the girl who went through that.
“It’s something I have thought about recently. As tragic as it is, it’s almost like that’s what she was here for.”
Local outlets selling the book include: Inchture Hotel; The Pickled Peacock, Errol; The Scottish Antique and Arts Centre, Abernyte; The Klub Health and Fitness Invergowrie; and both Pretty Fly Workshop and Eduardo Alessandro Studios in Broughty Ferry.
It is also available via shop.cclg.org.uk
