This is the story of how our chapter began. It is also a testament of how one small act really can make a difference! My name is Kelly. I am a 30 year old mom of two boys. I tell you this because my son Trevor is the reason the Utah Chapter began. Trevor was born at 24 weeks. He weighed 1 lb. 9 oz. at birth. He had many health struggles the first few years of his life. He had two heart surgeries, eye surgery and a devastating grade IV brain bleed that left us wondering if he would ever walk or talk. From the time he was born he was a fighter! There were many times in his life that we didn't know if he would make it. He wore oxygen until he was 3 yrs old, and struggled gaining weight. There was also a very scary moment when they thought he would need a lung transplant. He is now 9 years old and doing very well! He is a friendly, caring, and witty little boy. He has
spastic diplegia, a form of cerebral palsy. He is walking and talking! He is our little miracle.
When Trevor was four years old we had exhausted some of the non-surgical methods of treating his cerebral palsy. It was time for us to make a decision. We researched our options and decided that we wanted to go with the
selective dorsal rhizotomy. This is a surgery where they go into their spinal column and cut some of the nerves that are sending too many signals to the brain causing the muscles to be tight. We chose to have the surgery done at
St. Louis Children's hospital because Dr. Park is the best! (and luckily on our insurance)
The day before Trevor's surgery we were staying at the
Ronald McDonald House in St. Louis. Each night they have a time where everyone staying at the house can come and eat dinner provided by volunteers. We were sitting at the table together talking to the volunteers and enjoying our meal. I noticed a man sitting at the end of the table. He kept his head down as he ate. I figured he didn't want to be bothered. Trevor was sitting close to him, and started up a conversation. He asked, "So, where's your kid?" The man looked up and smiled. He told us that she was in the hospital. Trevor asked him why. He said she had a brain tumor that they had removed and was now recovering. Trevor then told him about his surgery and we concluded that we would be recovering on the same floor so we might run into each other.
The surgery was long, but went well. We stayed overnight in intensive care and then they wheeled us to his room. We were in the bed closest to the door. There was another child close to the window. The beds were positioned so the feet were toward each other. There was a bathroom in the middle giving each patient some privacy. I remember seeing so many cards, balloons, and gifts that the other little girl had around her bed. Her grandmother was quietly reading to her when we got there. They kept to themselves. There was an awkward feeling between us. I remember wondering if it was going to be hard sharing a room with them.
Later that evening a man walked into the room. The same man we ate dinner with. We were sharing a room with his daughter! The awkward tension released as he realize who we were and started talking to us. His family wandered over and we shared stories of how we had met a few night before. The week passed and we spent time getting to know them. At the end of our stay we exchanged information so we could keep in touch.
A few months later I called to see how she was doing. Her mom shared that she had continued to have health struggles and told us that
The Dream Factory had granted her dream. She told us we should apply for Trevor. Trevor's condition although life-threatening at times was stable so I didn't think he would qualify. She told me that The Dream Factory was different and that I should look them up.
Months passed before I decided to look them up. I found
The Dream Factory website. I still remember the feeling I got when I read a link that said
"start a chapter". I called the National Headquarters and talked with Anne, the National Director. I told her about Trevor and about my desire to open a chapter. Since there wasn't a chapter in Utah another chapter would have to grant Trevor's dream.
His dream was granted in March 2007. He wanted to meet
Chris Daughtry. We flew to Kentucky and got to meet Chris, his band and the staff at
National Headquarters as well. The trip was amazing. Trevor was given something that I could not have given him. It was a care free vacation for our entire family that was much needed after all of the medical stress we had all been through. When we returned home we started organizing the beginnings of the
Utah Chapter. It was officially established in June 2007.
I am grateful for Trevor's courage to go out of his comfort zone and start a conversation with a man that in return led us to this great organization. That one small act will impact the lives of many children and families for years to come!
