A schoolgirl diagnosed with an extremely rare condition has penned a musical thank you for the doctors and nurses who have been treating her.
Nine-year-old Gracie Mellalieu performed her song at a conference organised by Betsi Cadwaladr University Health Board (BCUHB) – moving many of the medical professionals to tears.
Gracie has Morquio syndrome, which affects only 3,000 people worldwide, and travels from her Flintshire home to Wrexham Maelor Hospital every week for the vital medication needed to fight the debilitating effects of the disease.
She was inspired to write her musical tribute following a series of workshops with BCUHB’s Musician in Residence Jamie Davies, at the hospital’s children’s ward.
Mum Yvette Mellalieu of Mynydd Isa said it was a joy to see the smile on her daughter’s face as she joined in the music and singing.
She said: “Gracie receives her medication via infusion and so we are here for several hours at a time, from early morning till late afternoon. It can be quite tiring and boring if there is not much for Gracie to do, so the music sessions were a fantastic distraction for her.
“I could see by the expression on her face how the music completely took her away from the hospital world into a place of creativity and fun.
“Gracie is usually in a room by herself while she is receiving her treatment but Jamie would always come and find her to make sure she didn’t miss out on the music workshops.”
Gracie, a pupil of Southdown School, Buckley, said: “I really enjoyed the Music in Residence sessions because they gave me something else to concentrate on during my time in hospital. It was good for me to think about something other than the treatment. It stopped me from getting so tired and allowed me to use my energy creatively.”
Gracie, who is learning to play the recorder at school, talked through some ideas for her song with her mum before writing the lyrics.
She said: “I haven’t given the song a title, but it was about expressing my thanks to the nurses and also Jamie for the help and support they have given me.
“I’ve written quite a lot of other songs too. Usually I think of ideas in my head, then write them down on my iPad. After that I try to formulate some music which I think will go with the words. My iPad helps with that too.”
A big fan of pop groups Little Mix and One Direction, as well as Katie Perry and Taylor Swift, Gracie’s favourite songs include Rather Be by Clean Bandit and Tomorrow from the musical Annie.
BCUHB Head of Arts Therapies Liz Aylett said it was an emotional moment for everyone present when Gracie performed at the annual Nursing Midwifery, Therapies and Health Sciences Celebration Conference, organised by BCUHB.
She said: “Being in hospital can be emotionally trying at any age. With our young patients activities like this which stimulate their thoughts away from their circumstances are especially valuable.
“We were delighted with the response to the Musician in Residence sessions and it was wonderful for us to hear the positive results via Gracie’s singing. Our members were so pleased when she sang for us at one of our conference meetings. She now has a whole bunch of new fans!”
Gracie’s dad Jonathan runs his own company supplying drapes and other accessories to the theatre and entertainment industry.
Her parents recognised Gracie’s natural talent for music at an early age and she says it is now one of her greatest passions.
She has twice performed before an audience of more than 500 at the annual Mold’s Got Talent competition and she has singing lessons from up-and-coming North Wales mezzo soprano Faye Anglesea. When she is older she hopes to audition for Britain’s Got Talent, but she can’t quite make up her mind whether she wants to make a career out of her music.
She laughed: “Sometimes I want to be a superstar, but I also wouldn’t mind being a teacher or a fashion designer. I want to go on Britain’s Got Talent because I love David Walliams, who’s a judge on it. His Demon Dentist book really makes me laugh – it’s a horror story but funny at the same time.”
Morquio Syndrome is so rare that there are currently only five patients diagnosed with it in Wales.
People born with the condition do not produce enough enzymes to break down materials the body cannot use, resulting in enzymes building up in tissues, bones and major organs. This leads to serious problems including heart disease, skeletal abnormalities, vision and hearing loss, and difficulty breathing.
The condition causes such pain in Gracie’s joints, muscles and back that she sometimes relies on a wheelchair to get around. She also has a short stature but her organs grow at a normal rate, a discrepancy which means her breathing can be restricted.
Despite the pain Gracie is determined to make the most of life and join in as many activities as possible. She said: “As well as music I love Brownies, reading, horse-riding at Llanfynydd and hydrotherapy sessions at Flint.”
Jamie Davies’ residency at the hospital’s children’s ward was part of the BCUHB Creative Well Arts in Health & Wellbeing Programme, made possible with the support of Arts Council of Wales and the Awyr Las Charity.