Patient with 22q contributes to beautifying the Toronto hospital tunnels

by 22q Administrator

Did you know that there is a set of underground tunnels that connects the Toronto General Hospital to SickKids Hospital, Mount Sinai Hospital, Princess Margaret Hospital, and Toronto Rehab? The tunnels allow staff to move patients, often with their families, between hospitals. Because the tunnel system was old and not very pleasant, The Weston Family Foundation approached the University Health Network Foundation and spent the last 3 years beautifying them. The Dalglish Family 22q Clinic team is delighted that one of our patients, Victoria, was invited to record her piano improv music for the tunnel system.

Victoria, who was diagnosed with 22q11.2 deletion syndrome (22q11.2DS, or 22q) at age 13, started taking classical piano lessons around age 8. Over the years, her parents tried to help her by changing teachers and trying different methods of learning classical piano hoping to find one that worked for her. One day, when Victoria was about 15 years old, she told her Mom that she did not want to play the notes the way they were written. She simply wanted to play the music pieces in her own way, thus ended her classical piano music lessons.

Since then Victoria has a lot of fun improvising at the piano. “Improv relaxes me and makes me calm. If I am sad, playing piano makes me less sad… I can express myself better through music than through words,” Victoria said. What she plays depends on her mood and what she is thinking about. In general, she just plays whatever comes to mind.

While improvising at the piano was fun and relaxing for Victoria herself, she discovered that she could share her music creativity with other people. At age 17, she attended Camp Towhee, a transformative summer camp for youth with learning disabilities supporting their social and emotional development. She played the piano in the music cabin, and her fellow campers were so soothed that they fell asleep. That was the moment when Victoria realized her piano improv could help people. Since then, Victoria has played at weddings, charity events, corporate events and Famous PEOPLE Players.

In 2019, a Weston Family Foundation representative asked Victoria whether she would like to contribute music to the beautification of the UHN tunnels. She was “excited to be part of the project.” She looked at some of the illustrations from tunnel designer, Stefan Sagmeister, for inspiration. Also, one of Victoria’s friends had used the tunnel system, and Victoria wanted to create music she felt her friend would have enjoyed listening to.

Victoria went into the recording studio and over several sessions thought of the illustrations from the artist, and thought about her friend. She played and recorded whatever came to her mind, and that is the music that the UHN Tunnels users now hear.

Victoria hopes her music will give patients and their families, and hospital staff a few moments of relaxation and calm. “I am honoured to share my music with everyone who use the UHN Tunnels.” On October 31st, 2022, at the ribbon-cutting ceremony of the tunnel system, guests heard Victoria’s music for the first time and gave her very positive feedback. She felt great to receive the lovely comments. Victoria’s mother said, “The whole process of bringing Victoria’s music to the UHN Tunnels has been a supportive and enjoyable experience for her.”

Victoria would like to take this opportunity to extend her sincere appreciation to the staff at the 22q11 Deletion Syndrome Clinic at SickKids Hospital and at the Dalglish Family 22q Clinic at Toronto General Hospital for holding educational and fun events for patients and their families over the years. As a result of these events, “I have formed long-time friendships with others with 22q, and realize I am not alone.”

Thank you for your wonderful music contribution, Victoria. We are very proud of you!

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