Jack Tusick was born on July 18th, 1994 to his parents, Ray and Sandy. They had two other children, Hillary and Matt, and they were quite shocked to learn Jack had several severe congenital heart defects upon his birth. His medical condition was very serious and Jack underwent a heart valvoplasty at just 2 days old. He subsequently had open heart surgeries at 2 months, 4 months, and then again at 21 months old. Jack was small for his age, but was walking and beginning to talk. He was a bright light for our family and friends….he was our miracle boy!
Jack suffered a traumatic brain injury during his 3rd open heart surgery leaving him with significant deficits. He could no longer walk, talk, roll over, eat independently or play with toys. It was difficult for him to hold his head up or to swallow liquids.
With love, prayers, and therapy, Jack slowly began to recover some skills such as rolling over, eating, and drinking. His eating improved as well as his ability to make eye contact and communicate through his vocalizations such as laughing and crying.
We were determined to create a “normal” family life despite Jack’s brain injury and his confinement to a wheelchair. Ray and I felt strongly that God would show us how to help Jack fulfill his purpose regardless of his limitations. From 1996 until 2002, we did things a typical family would do: outings to the park, walks, movies, family vacations to the beach, school functions for all three kids and holiday family celebrations. Jack loved people, watching Barney and Timmy the Tooth, walks outside, the wind blowing the leaves, ice cream, any dessert and of course swimming! He seemed to connect with people with his eyes even though he could not speak.
In 2002, we learned of a place called Island Dolphin Care in Key Largo, Florida. They provided a week of dolphin therapy and classroom activities for children with special needs. After speaking with their founder, Deena Hoagland, we realized Jack’s story was very similar to her son’s story. Joe’s positive experience interacting with a dolphin named Fonzie inspired Deena to start a program for other children with special needs. We felt it could be something very special for our Jack. We took our first trip with the whole family that Easter break and were very excited to see Jack swim with the dolphins, as well as spending some quality vacation time together. Jack’s first swim with Squirt and Deena left a lot to be desired. He cried and didn’t appear to be enjoying himself the first two swims. However, the smiles that began to appear the next few days were enough motivation for us to return the next spring, and the next, and the next.
As Jack grew and matured, so did his relationship with Squirt. They became more than friends, there was a visible bond between them and we became like family to our friends at IDC.
In 2009, we decided that once a year was simply not enough time to visit Squirt and IDC. Jack’s joy was evident in his smiles and laughter and we began doing a week of therapy in the spring and the fall. Jack hosted many family members and friends throughout those visits and they were all deeply moved by Jack’s happiness and the other children that were experiencing the magic of Island Dolphin Care. We met people from all over the world and children with many different disabilities. We were all just normal families when we were at IDC, loving our children and building memories.
Because Jack seemed to have such a sense of what he wanted or what was happening around him, Deena and Eli ( his dolphin therapist) approached us about a possible communication aid for Jack. They felt he had the potential to use an eye gaze computer called a Tobi to help him communicate with others, especially his peers at school. Typically, Jack let us know if he didn’t like a movie we put on by crying ,rolling over or trying to change it with his feet. We were very in tune to his needs but Jack needed a voice, especially around people who were not familiar with him. We began by trying to get Jack to choose between two movie choices with his eyes: Timmy the Tooth or Barney. Depending on his choice, we would show him that particular movie for a few minutes and then do the same thing over again. Jack began to understand the process and he learned to make choices for his videos. We then started to expand the process to include food, drink, and activities.
With each visit to IDC, his abilities improved to the point that we purchased a Tobi for Jack to use at home and more importantly at school.
In 2007, Jack had his 4th open heart surgery at the University of Michigan. It was a very high risk procedure but Jack triumphed again with the help of miracles and answered prayers. He came home 10 days later with two new artificial heart valves which allowed him to double his weight and grow into a young man. His use of the Tobi increased to the point that he could tell his friends and his aide what he wanted, show them videos of his time with Squirt, talk about current events, and play games……all by using his eyes! He visited his former third grade teacher and her class for field trips monthly in an attempt to meet new friends and enlighten them about kids like himself. One girl told her mom after Jack’s visit: “Mom, I just met a boy who talks with his eyes!”
Jack continued to mature and was well known in our community. People often stopped us on our walks to say hi, and we continued to maintain what was our “normal” family life. He went to his brother’s wrestling matches and his sister’s plays , celebrated summer holidays/ birthdays at the lake and we still made our annual journey to the beach at Nags Head. Jack even got his own beach wheelchair!
In 2013 we started taking Jack to IDC two weeks in the spring and one week in the fall. He and Squirt would recognize each other immediately, their joy evident to all watching them reunite. I would begin telling him a few weeks before we departed that we were going to see Squirt. He would start telling his friends at school by using the videos on his computer , showing them the things he loved doing there and his excitement was genuine.
Jack had another unexpected cardiac complication in the summer of 2014. His aortic valve began leaking and he was once again at U of M for a cardiac procedure that lasted over 6 hours. Prayers for another miracle were answered and they were successful in placing two plugs to block his leak.
Although his sister and brother had gone off to college, Jack had lots of activities, family and friends keeping him loved and happy. He LOVED going to school and had many friends at all the Bay Village Schools.
In July of 2015, Jack turned 21 on the beaches of Nags Head. Although he enjoyed his birthday, he had been feverish and not himself. We rushed him to Norfolk Children’s Hospital and he was admitted with endocarditis,a very serious heart infection. We returned to Cleveland after a week in the hospital and Jack began his recovery receiving 8 weeks of IV antibiotics. September arrived and we were devastated to learn that the endocarditis had caused irreparable damage to Jack’s valves and heart. He was not a candidate for any further open heart surgeries or a heart transplant due to his history. Jack was given months to live and we chose to enjoy every single day. We were grateful for six more trips to Island Dolphin Care, weekends with family and friends at our lake house, beautiful holidays together, a trip to Disney where we discovered Jack loved fireworks, and his graduation day from Bay High School. Jack could not have been happier for those last several months despite his physical health issues. He was so very tough and had an absolute purpose. He passed away peacefully 4 days short of his 22nd birthday. We are choosing to remember his joyful smile and his beautiful spirit through the Jack Gives Back Foundation. Jack will live on through giving to others.