By Amy Babcock
[Editors Note: San Eli News endeavors to bring you stories of those from in and around our community. Kieran Johnson is just one of those stories. Having overcome so much and to have played football for Montwood is an amazing feat, and a taste of what is yet to come with this young man. We talked our very own Amy Babcock to talk with him. We do encourage you to listen to the audio of her conversation with him]
Recently, I had the good fortune to be able to talk to a young man who is looking to inspire the world with his story.
A native El Pasoan, Kieran Johnson was born with a rare genetic disorder known as Williams Syndrome. This developmental disorder affects many parts of the body. Typically characterized by mild to moderate intellectual or learning problems, unique personality characteristics, and heart and blood vessel (cardiovascular) problems, it only affects 1 in 10,000 people worldwide.
For Kieran, the main issue he had was a cardiovascular issue that required him to undergo two open heart surgeries before he reached his 3rd birthday. But this hasn’t stopped him from being able to serve as running back for Montwood High School during a televised game. With the number 4 on his jersey, he scored during that game, and hopes to play more football in the future.
What’s the one thing he wants to tell everyone?
“Just no matter what happens to you in life, always keep striving for the best of your abilities. No matter how much it takes, be yourself, be proud of that uniform you wear, be proud of the colours, represent your school. And no matter what, the outcome will be remarkable because everyone has a purpose. We all do.”
So, spend the next 15 minutes learning more about his young man and his remarkable journey by hitting the play button above. I promise, you’ll be glad you did.
Keiran is an amazing individual with a bright future who justs wants to do his own thing. He doesn’t let Willisams Syndrome define him or limit him.
We are also proud of him and for Montwood High School for having him on his team. This alone gives us hope for the future of our country.
Now, let’s get him on the sidelines for a Denver game!
The following is from the Williams Syndrome Association:
Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7. The deletion occurs in either the egg or the sperm used to form the child with Williams syndrome. Accordingly, the deletion is present at the time of conception. It is likely that the elastin gene deletion accounts for many of the physical features of Williams syndrome. Some medical and developmental problems are probably caused by deletions of additional genetic material near the elastin gene on chromosome #7. The extent of these deletions may vary among individuals. In most families, the child with Williams syndrome is the only one to have the condition in his or her entire extended family. However, the individual with Williams syndrome has a 50% chance of passing the disorder on to each of his or her children.WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture. Children with Williams syndrome tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.
But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. As adults, most people with Williams syndrome will need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees; often working at assisted living homes for senior citizens, hospitals and libraries, or as store greeters or veterinary aides. Just as important are opportunities for social interaction. As people with Williams syndrome mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression. They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships. There are many physical features and medical challenges which are fairly common to Williams syndrome. However, every child is an individual – the number of features present, and which features are present varies from child to child.
Have a story you want to share? Get in touch with us at firstname.lastname@example.org or call 915-201-0918.
Amy Babcock is a native El Pasoan that wants to share stories of inspiration and education with the city she calls home. She writes for several local news media publications including San Eli News (sanelinews.com) and Parallel Soliloquy (parallelsoliloquy.com).
Photos provided by Kieran Johnson