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Our son, Jasper was diagnosed with MPSVI (Maroteaux-Lamy Syndrome) last spring, and shortly after we were first introduced to Terry Duncan, Child Life Specialist.
I wanted to take an opportunity to let you know how valuable this program, and Terry in particular, has been in our journey already since that time. From the first visit with Terry we were impressed with how he related to our Jasper. He was very kind and patient with him. Our first big hurdle was having porta-cath insertion surgery. The surgery was pushed up in the schedule due to a cancellation so we never had the opportunity to participate in the Parental Presence at Induction program. Sending our son into the operating room by himself was a thought neither my wife nor I wanted to even consider and we were very grateful when Terry volunteered to accompany him in. We were very comfortable with this because Jasper had already become comfortable with Terry. Even more impressive was the fact that Terry arrived in the pre-op waiting room an hour before the surgery and helped to appease Jasper (and his parents) before it was time to go in. He took time out of his day to play trains and games with Jasper. Then, when it was time, he took Jasper by the hand, escorted him into the O/R and helped him lie down on the table and accept the gas mask for anesthetic. This gesture from Terry made us as parents feel 1,000% better about the situation.
Since then, Jasper has been receiving weekly infusions of enzyme replacement therapy in the PMDU community area. While this room can get pretty busy and distracting sometimes, Terry is always there when we arrive, ready with board games, toys and attention-grabbing gadgets to help keep Jasper occupied during the six-hour stays. But he never stops there. Terry jumps right in, takes a game piece, puts it on the start line and proceeds to play right along with Jasper and us in a game (or two) of Candy Land, or whatever we choose to play that day.
I’m not sure I can ever express enough how much of an impact the Child Life program - and Terry specifically - has had in Jasper’s (and our) journey thus far. Jasper talks about Terry all the time, so much so that our other children and immediate family members have lined up to take a turn coming to ERT to take part in the process but also to meet TERRY!
In summary, I want to express the gratitude we feel as parents. The Child Life program at Children's Hospital, LHSC is amazing and very beneficial to both patients and families. We are very lucky to have that service available and even more fortunate to have met Terry, who has already become an important person and friend to Jasper and our family.
Thank you very much.
A grateful father