When you join enCourage Kids Foundation, you join a group of families, staff, volunteers, and supporters who truly understand the ups and downs of having a seriously ill child. Our kids and families form relationships and bonds with other families in our program that last a lifetime. Although children age-out of our Escapes program when they turn 19, they know they have a family for life with enCourage Kids.
Recently, we had the opportunity to catch up with a truly remarkable young man, and enCourage Kids alumnus, who proves exactly what it means to break barriers. David Gordon joined enCourage Kids when he was 11 years old, but was diagnosed with Wolf- Hirschhorn Syndrome at birth. David’s extremely rare chromosomal disorder has caused skeletal abnormalities and characteristic facial appearance, congenital heart defects, seizures, and delayed physical and mental development.
According to David’s mom, Carol, one of the biggest barriers her family faced since David was born was the inability to connect with those who understood what they were going through. “People we knew well felt uncomfortable and didn’t know what to say or do. We needed a new circle of support – people who knew how precious our time was and understood that we didn’t want to spend it surrounded by sadness or pity,” Carol shared. By attending enCourage Kids Escapes, David and his family were able to connect with other kids and families in an environment where they felt “normal.”
“This program was the light of our existence for many years. Having a happy environment with kind people to connect to was like a breath of fresh air when many times in our daily lives I felt like we were choking,” Carol expressed. “On the days that we were down or had obstacles that were particularly difficult, we could look to our calendar and see an Escape, which was a shining light.”
David stop by our NYC office to create his Barrier Board.
Having enCourage Kids by his side turned David’s feelings of exclusion and unusualness upside down. During the seven active years the Gordon family spent in our program, David and his siblings attended plays, concerts and sporting events that they would not have ordinarily been able to access. “They became the ‘rock-stars’ of their school – bringing pictures and stories back to our town made them all feel special,” explained Carol. She knew that these little moments would essentially become some of the biggest and best memories her family would have. “The attachment of “fun” to enCourage Kids events that we went to with David was contrary to most situations in our lives. It’s exactly what we needed.”
He may be all grown up now, but David is still a part of our enCourage Kids family. “The positive effects of these programs do not stop when the children “age out,” Carol said. “Reflecting on these wonderful Escapes truly lasts a lifetime.”
Now 22, David continues to break barriers every day. Universally, those with Wolf- Hirschhorn Syndrome have severe physical and mental developmental delays, but David is able to walk and talk in short sentences. Employed at a local greenhouse dedicated to community-based horticulture and employing those with developmental disabilities, David actively tends to plants and other business necessities while learning new life skills. David is also currently residing at a semi-independent living community, where he has roommates and his own living space independent from his parents.
Executive Director, Michele, and David with his Barrier Board.
When we asked David what he thought his biggest barrier was he was quick to tell us that he didn’t have any. “I turn my barriers upside down!” he happily exclaimed. David’s board represents his positive outlook and appreciation for life despite his rare medical condition.
Each of our enCourage kids has an incredible story to be told – one of courage, strength, and determination. Breaking Barriers truly highlights these qualities in each child. By breaking the boards, Leif Becker – martial arts master and current world record holder – showcases the necessary physical and emotional strength and courage that it takes for sick kids to break through their fears and challenges every day.
When learning about Breaking Barriers, both Carol and David lit up with excitement. They are sending well wishes to Leif in his world record setting attempt. “Leif – we hope that your name goes down in history for your talent and your kindness. Your hands and heart are doing more good than you realize.”
To learn more about Breaking Barriers, click here.