May 30, 1999 – July 22, 2006
Evan Ty was born on May 30, 1999. Evan always liked to be on time and this was his due date-his time to arrive! As parents of two daughters and two granddaughters, we were very excited at the prospect of a grandson — how spoiled he would be in the midst of all these females! Papa Rick was already driving the nurses crazy with his dry humor as he waited anxiously to hold his new ally. When Evan was placed in the isolette for observation, the concerned look on the nurse’s face marked the beginning of our seven-year journey.
Evan was born with complex congenital heart disease. Some of his conditions included:
- Asplenia and midline liver
- Total Anomalous Pulmonary Venous Drainage (tapvd)
- Double Outlet Right Ventricle (dorv)
- Atrial Septal Defect (asd)
- Ventral Septal Defect (vsd)
- Pulmonary Stenosis
- Hypoplastic Left Heart Syndrome
Evan’s condition mirrored that of our first child, Kristi Erin Jenkins, born on November 17, 1977, who was also born with Hypoplastic Left Heart Syndrome. Surgery was not a viable option in Canada at that time and Kristi only lived for two days. But Evan, in spite of the diagnosis, came home with no surgical intervention and provided a sense of magic to the family. He nestled into his life with love and wit and charm and became part of what we referred to as the “triplets,” meaning the three cousins, Jenaya, Jaylan and Evan.
Shauna, Evan’s mom and certified best friend, refused to accept that Evan could not do what all other children could do. His development was normal and he progressed through each new phase of life with cousin Jaylan. He could, however, use chopsticks much earlier than her-before the age of one. Evan saw every new movie and mastered every new play station game. Limitations were never an obstacle and when blue lips were most evident, Evan was held tight just for a while until he was off and running again. Soccer, swimming and running the bases (even if it was on his coaches’ shoulders) were all activities Evan enjoyed and we are grateful for the memories and the team pictures.
Evan had many friends and loved all parties and special occasions. When a special day was not in sight he would declare, “Let’s have an un-birthday party,” and in came the neighborhood for cake and ice cream complete with sprinkles and candles. Evans 3rd birthday came complete with a motorized Jeep from his Nana Judy and Papa Bill and he was off and in charge of the neighborhood. When the hospital became home for Evan, we suggested to the gift store at the Stollery that a prototype of all new toys be brought to Evan’s room – we were going to buy them anyway!
Evan’s life was a series of celebrations. For Evan – and for the family – days were measured by how we could celebrate or what can we do for fun. We celebrated when Evan became a big brother to Marcus, born on June 7, 2004. We celebrated as a family on his “Make a Wish’ trip to Disney World. We celebrated when he became a national celebrity after his Glenn Procedure. When asked what he wanted to be when he grew up, Evan would reply “a superhero!” Evan truly is a superhero to many. What a wonderful life we shared with a wonderful little guy. In between birth and death- there is life and we celebrated this special life!
Although his life was measured in milestones we approached the experiences with opportunities to teach and learn. Rick would gently remind medical residents that Evan’s heart was not on the wrong side, it was in fact on the “right” side of his body. Evan learned to be his own advocate by only allowing nurses two pokes and then he would chirp, “Call the lab, let’s get an expert in here!”
Evan was listed and approved for a heart transplant when he passed away from a massive stroke on July 22, 2006, after being taken off life support. He passed from the Earth that we know and on to his rightful place in Heaven.
Charlene and Rick Jenkins
“Mama and Papa”
It is with great respect to Evan as well as his family, friends, caregivers and teachers that we created The Evan Ty Jenkins Pediatric Research Foundation operating as “Treasure Life” that is registered in the province of Alberta.
We work hand in hand with the Stollery Children’s Hospital and the Heart and Stroke Foundation to make positive changes for Cardiac Children.
For more information about Treasure Life and it’s goals please visit our About Us page.