Being Stephen

Being Stephen

When people ask me "How do you work with children with heart disease and other challenges?" they almost always follow that question with a statement like "I could never do that it is so sad". And, almost always, I reply "I love it" and follow up with, "I probably would not like to work with adults nearly as much". It is true that in the world of clinical pediatrics, you will find some of the sickest and most vulnerable kids. However, more often than not you come across the most amazing children, who with the help of resilient parents, step up to the plate and meet their physical and emotional challenges head on.

I came across Stephen last fall in a request from his parents to have him exercise with our program Growing Stronger. Stephen is a 12 year old young man who was born with a cardiac condition called Epstein’s Anomaly. This is a malformation of the tricuspid and mitral valves of the heart, which for Stephen required four open heart surgery very early in his life. Stephen is also legally blind and has neurological concerns. Despite these challenges, his parents Deidre and Stephen maintain that Stephen has excelled and handles these situations with dignity and pride.” He is in the honors program in seventh grade and has received academic awards and numerous trophies for adaptive golf for the visually impaired”. He is typical of a young boy his age in that he doesn’t like to get dressed up or eat vegetables but he does enjoys participating in basketball and riding his bike and especially enjoys spending time with his dog Champ.

When you meet Stephen, he is always gracious, curious and amazingly bright. Cardiovascularly speaking, Stephen is within somewhat normal limits for a child who has this congenital disease. However his parents’ concerns were that” due to his heart complexity, his endurance has always been somewhat decreased and shortness of breath would become prominent after any increased activity level. As he became older his parents felt gym class was getting more competitive and Stephen was not able to keep up with his peers. They also noticed his core strength and low muscle tone perpetuated a lack of conditioning. So when they turned to Stephen’s cardiologist for recommendations, she mentioned Growing Stronger.

Growing Stronger is a mobile, one-on-one exercise conditioning program for kids, teens and young adults with special needs. It is not a 3^rd party reimbursable program like physical therapy or occupational therapy: meaning insurance doesn’t pay for it. He did not really need physical therapy, but rather a program that could increase his stamina and provide him an opportunity to improve his fitness level and learn how to independently workout in a community setting. Often, preventative and progressive programs, such as Growing Stronger, are paid out of pocket. More often than not, parents do not have the additional monies to pursue these types of programs leaving many children with congenital issues deconditioned, limited social experiences, out of gym class and out of luck.

Cardiac rehabilitation programs are rarely available for children, and are often hospital-based and not community –based. Putting someone like Stephen in a nearby adult cardiac rehabilitation program is imprudent for obvious reasons…he’s not an adult! “Growing Stronger met our needs by coming to a public exercise facility near our home (YMCA) then developing and creating a specific comprehensive program for a young boy like Stephen, which met all of his special needs. Growing Stronger’ s individualized instruction gave Stephen the opportunity to thoroughly learn and utilize the equipment at his own pace so he will be comfortable with it as he progresses on his own. The exercise plan that was designed for Stephen, met all the key components we were looking for in an exercise program and more. The instructors Kasey Oczkowski and Annie Linton are so incredibly knowledgeable about all aspects of exercise especially for children. In addition they are compassionate and very cooperative to meet all of a child's special needs. Growing Stronger has been extremely beneficial to Stephen. We also see a noticeable improvement in so many areas. In addition to increased strength, agility and more, Stephen's confidence has boosted. We are so grateful to Annie Linton for fighting so hard to get the insurance company to recognize this wonderful service for a child's comprehensive cardiac care. And it was the insurance company paying for Growing Stronger made it possible for Stephen to attend. “

The future of exercise conditioning, for kids like Stephen, will depend on how insurance companies look at the value of exercise conditioning as a preventative medicine. For Stephen, it has been priceless.

Stephen plans on continuing his exercising at the Y, with a continuity plan from Growing Stronger. “Stephen will likely need another open heart surgery in his late teens, so the stronger his heart and body are, going into surgery, the better off his recovery will be. We would absolutely recommend Growing Stronger to others with similar situations. Stephen is Growing Stronger’s biggest advocate. He has thoroughly enjoyed each and every session.”

Thanks Stephen, we have enjoyed working with you too.

Annie Linton, M.Ed

Owner/Program Director

GrowingStronger,LLC

growingstronger@comcast.net

610-637-8059