Inspiration
DANTE
Most people remember March 20, 2020 as the date when the coronavirus started. For our family, it is the day Dante's life changed.
Dante's Uncle Tom was visiting and asked if he could borrow some weights to start to workout. As Tom tried out the weights, we asked Dante if he wanted to try as well? Dante said, "sure," picked up the weights and did a few bicep curls. Everyone cheered and we told him he could do the same thing tomorrow and call Uncle Tom so they could compare notes. Little did we know how far it would go...
Dante did a few exercises for a few days, but the big boost was when his cousin Mikhail got involved. Mikhail, a certified teacher, had some free time in the Covid summer and decided to workout online with Dante for a few days. Well, they started out with 3 exercises and it was a hit. After a week they added another exercise, and another and another. Mikhail's unique ability to relate to Dante, and to motivate and provide a positive example, took Dante's workouts to another level. Dante became addicted to success. He saw the weights he was lifting increase, he saw the number of exercises increase and he began to feel more and more confident. Before we knew it, Dante and Mikhail had worked out for 150 days in a row!!! They were doing 3 sets of 20 exercises.
Dante started to transform physically, but the change in behaviour was more dramatic. As he became more confident, his anxiety reduced and his energy levels increased. Covid Dante was born. To cap it off, Dante decided he wanted to change his diet and lose weight. If you know about PWS, you know this is a big deal! People with PWS are constantly hungry and have great difficulty managing their weight. Building on the confidence Dante gained by working out, he decided to start the whole30 diet. To date he has lost over 35 pounds! The best part of the whole transformation is he is self-motivated. He manages his own workouts, and makes sure anything he eats is "Whole30 Compliant". It's been truly amazing.
The final step came when a few friends of Dante's heard about his success and asked if he could help. At that point, Let's Go Fitness was born. Dante, Mikhail and a growing list of trainers provide online fitness classes to athletes using zoom. As important as fitness is, the athletes seem to simply enjoy having fun and meeting other athletes from around the world. It seemed like every week another friend would join. Now Dante is training friends in over 5 different countries and is adding more every week. Let's Go has even added a yoga class.
2020 has definitely been a crazy year, but for Dante it's been the best year of his life. If you're interested in joining our community, Dante would love to meet you.
Let's go!!!
Robbie (Deceased)
Robbie was an inspiration for many people with PWS and many people in the community. He was passionate about music and literacy. He sought purpose in his life. He had a Youtube channel where he read children's books online. You can still find his great choices in his former Youtube video postings. Robbie will be missed by his BCPWSA community and many other people who's lives he touched.
ISABELLE
At Isabelle's middle school, students in grade 9 can traditionally sign up for a four-day high-altitude hiking trip to Cathedral Lakes Provincial Park. This true wilderness experience comprises jagged mountain peaks, azure lakes and flower-dappled alpine meadows, but the experience is definitely for the adventurous and fit. Isabelle wanted to take on this challenge and took the time to prepare and to train.
With her peers, she hiked in her supplies, helped set up camp and took on the daily hikes to various mountain peaks. She not only managed this once-in-a-lifetime experience, but embraced the difficulty of the challenge and the excitement of the adventure. With supports from her P.H.E. teachers and a caring and compassionate CEA, she took on the mountain chain like an experienced mountaineer!
David
David is in his thirties and is doing very well. He has surpassed all the bleak literature that was handed to his parents in the hospital when he was born. He is able to manage his food intake and reads labels like a hawk! He is now a mini chicken farmer and raises 5 hens. He also has 2 therapy Boston terriers that sleep with him every night and provide much companionship. David continues to work six hours a week at a local grocery store. The staff want to clone David as he loves to help with the elderly and with customer service. He attends a community program for the disabled called SOCLA three days a week. He is involved in lots of activities and he delivers our weekly community newspaper. He has managed to keep his weight stable and he walks almost every day. He is very happy and positive. David is very content with his life.
Dr. Terrance James
Terrance James has been working with youth and adults with Prader-Willi Syndrome since the 1980s. In his retirement, he continues to be involved with and interested in this unique population. Here is his inspirational story:
In 1982 I was introduced to PWS by a chubby, stubborn, somewhat volatile young teen who would fall asleep in my class. I became her case manager at school and part of a multi-agency support team in the community. When I returned to grad studies in 1985 I took the community concerns for this young lady with me. In a course on assessment and testing I age-matched her with another teen. I spent a semester working with the second young lady with PWS and while there were some similarities, there were more differences. Another teen moved in from out of province and I was asked to work with her, which I did for two years. When I went to Gaza on a CIDA project I was given the case history on an undocumented Arab case of PWS. I was gathering experience in a relatively new field. My doctoral dissertation became: Social and Psychological Aspects of Prader-Willi Syndrome. Research involved travelling across the four western provinces interviewing families and assessing individuals with PWS. Thereafter I had opportunities to represent Canada at the second IPWSO conference in Norway, and to speak at conferences in Australia, USA, and Canada. I was part of the organizing committee that hosted the first American PWS conference outside of the US, in Calgary in 1986.
In 1987 I returned to my work as an administrator of special education for the Comox Valley School District, but always wore a second hat as a private rehabilitation consultant specializing in PWS. This was my gratis personal ministry to help PWS families. In 1989 I co-authored PWS: Residential Options in Western Canada with Geoff Willott, President of the Alberta PWSA. In 1992 I co-authored Prader-Willi Syndrome, Home, School and Community with Dr. Roy Brown, my doctoral program supervisor. In 2010 I did a 25 year follow-up study which resulted in two books: Prader-Willi Syndrome: Quality of Life, and Prader-Willi Syndrome: Growing Older.
I have been retired from my day job for 17 years, but I am unable and unwilling to retire from PWS. I get a weekly phone call from a 40-year-old woman with PWS who I first met as a pre-schooler, daily FaceBook updates from a woman with PWS in Australia, sporadic invitations to parties or events with families, or requests for professional help. I continue with an interest in seniors with PWS, friends that I have known for the last 35 years. I have preferred to stay in a PWS home rather than a hotel when invited to a conference in order to experience PWS first hand. My wife and I have hosted international visitors with PWS in our home. Working with PWS has been a privilege. I am grateful for what I have learned from parents, and individuals with PWS, the real experts on this syndrome.
When I began my journey with PWS, the medical prognosis for children with PWS was death as a teen or young adult. The oldest member of my original study is now 68. A lot of progress has been made since I was challenged by my first student. I delight in the progress.
The BCPWSA has much gratitude for his long-term contributions to improvement in quality of life for people with Prader-Willi Syndrome.
Prader-Willi Syndrome in action...
The everyday challenges of Prader-Willi Syndrome can be overwhelming. With the right supports, our children can face the challenges with courage and determination.
Sophie
Sophie enjoys being active including horseback riding.
Niki
Niki loves her Blue Jays team.
Isabelle
Isabelle has always been an avid sports fan...especially a Canucks fan.
Robbie
Robbie lived in a home share and had a youtube channel where he read children's story books.
