Josh's Story

It is often said that heroes come in different shapes and sizes. Maybe that saying is a bit cliche. Maybe it’s not. But the story of my hero is anything but cliche. Joshua Allen Spotwood Smith was born and raised in Harrisburg, Pennsylvania. I first met Joshua at a sporting event and it was apparent to everyone that he was the biggest fan in the stands. But this was only obvious by the excitement the was etched into his innocent face. My hero had been robbed from the opportunities that we too often take for granted. Joshua was unable to cheer for his team because his speech was slow and slurred. The common gesture of “high-fiving” friends after the game was out of the question because he had limited muscle control and was confined to a wheelchair. Despite his devastating medical condition, Josh was by far the most spirited fan at that game.

Joshua was born with A-T (Ataxia-Telangiectasia), also known as Louis-Bar Syndrome. This rare but debilitating disease effects one in 40,000 to 100,000 people worldwide. The disease brutally attacks the nervous system, immune system, and other body systems. Sadly, there is no cure. Throughout his precious 18 years on this earth, my courageous hero battled countless days in the hospital. Because there is no way to slow down the progression of this disease, Joshua’s health worsened. On Thanksgiving Day of 2006, Joshua was rushed to Penn State Hershey Children’s Hospital for the final time. You can’t prepare yourself to see your very own hero relying on life support. I felt helpless with not being able to help Joshua or his family. The feeling was utterly devastating. While I watched the breathing machines move up and down, I could only pray that there was something that I could do. Before I left the ICU, Joshua’s mother, Nicole,said something that would change my life forever. She made a wish. Her wish was so simple, yet heartfelt. It’s the kind of wish that only a mother watching her son, slowly die, could make. Nicole’s wish was that her only son would not have to lay in a hospital gown. It was an unsettling sight that had become too familiar to her family. She wished that Joshua could spend his final days the same way he wanted to spend most of his days, cheering on his favorite sports teams.

On my drive home from the hospital, it was impossible to ignore Nicole’s request. I marveled about my unexpected friendship with Joshua and how we shared a passion for sports. It was hard to imagine that he would no longer be able to cheer for his favorite teams. Suddenly, I thought about the Eagles jersey that I had at home and I knew it was something that Joshua would like. However, for obvious reasons, you can’t wear a jersey while you are a hospital patient. But then I was struck with the realization that I could make Nicole’s wish become a reality. When I returned home, I immediately modified the Eagles jersey into a hospital gown and returned to the hospital the very next day. The nurses eagerly switched out Joshua’s gowns, making Joshua and his family very happy.

I wasn’t able to help my hero battle his biggest fight. But, I was able to bring some joy to him and his family during his final days. In honor of, Joshua Allen Spotwood Smith, I want to bring the same kind of joy to the millions of children, worldwide, that have to spend time in hospitals. This will help a child feel less anxious about their condition and bring more cheerful to their current situation. The best part is that each child will be able to wear a gown of their liking. Children, worldwide, can trade in their hospital gowns for anything they want: sports themed, princess’s, super heroes, and anything else kids daydream to be can now be possible thanks to Joshua’s spirit.

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