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Jonathan Schell

What Jonathan’s family believes made him extra special was that he had and an extra chromosome, meaning he had Down Syndrome. Jonathan did not know he was different. He was funny, loud and loved to dance.  Jonathan gained a circle of friends through his experiences with Liberty Resources. On Fridays he would go to the mall with his sister Nikki and get Jonathan a haircut all in preparation for his Friday Night Dances.

In the summer of 2003 Jonathan was diagnosed with cancer.  Treatment was hard and the medications made him not himself. The steroids in particular made him angry and violent. The staff at Upstate Golisano Children’s Hospital understood every person receives care differently. There were days that Jonathan didn’t want anyone to assist him but his family and the team would stand by the families side and guide them through. They went above and beyond to make him comfortable and took time out of their busy schedules to stop in to sing and dance or help him find his favorite movie.

“His family took turns spending the night with him and are grateful for these last moments and their opportunity to say “Goodbye.””

He went into remission when he was 17 and remained in remission for 5 years. Life went back to normal. Jonathan graduated and moved into a group home. But that was short lived. One day when his family picked him up for for lunch they noticed bruising all over him. The staff brought him to the hospital to get his bruising checked out.  The news was devastating. Jonathan’s Luekemia had come back full force and he was given two weeks to live.

Jonathan lived for one more month. He was so happy and in such high spirits during that time. He loved a tattoo that his sister Nikki got in his honor. His family took turns spending the night with him and are grateful for these last moments and their opportunity to say “Goodbye.”

The Staff at Upstate Golisano Children’s Hospital made sure that Jonathan’s family knew what resources were available to them. With their help we they were able to receive food and parking vouchers to help with the financial strain that can be put on a family during a long-term hospital stay. Jonathan’s sister Nikki joined the Sponsorship Committee with Paige’s Butterfly Run in the fall of 2022 as a way to honor her brother Jonathan’s life.

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