Diane Seely calls it “Conversations With a Boy,” her effort to share the daily struggles of her 14-year-old son, Reagan, who is living with a rare chromosome disorder known as Prader-Willi Syndrome.
But, Diane was not prepared for the conversation with her boy when she suggested Reagan should record a public service announcement for Prader-Willi Syndrome Awareness Month.
As she held up her telephone, her son revealed the isolation and loneliness he experiences every day because he is the boy who is a little different.
“Why, why does it have to be me,” he asks, “the one who is in school being made fun of?” He asks gut-wrenching, unanswerable questions about being an eighth-grade student with few friends. “Why does it have to be me that people don’t understand, don’t see?”
PWS causes the loss of function of specific genes, and results in weak muscles, compromised metabolism, behavior and cognitive development challenges. People living with PWS often experience a constant feeling of insatiable hunger. So, Diane expected Reagan to describe the physical challenges of his disorder.
“I had no idea what he was going to say,” says Diane, “I didn’t tell him what to say, just you should tell people how you feel.”
Diane and her husband Rob say they knew Reagan faced challenges at school and was having a rough year, but they were not prepared to hear him say, “why do people treat me like I am nothing.”
Rob was out of town when his wife sent the video.
“You know there is a difference between people being kind to him and people accepting him. You know, pretty much everyone is kind, but it’s the acceptance” that is lacking, said Rob.
After Diane shared Reagan’s video, Colleen Marshall asked if I could also share it on her Facebook pages. Diane was eager to spread the word about PWS and accepting those who live with it. The Seelys know that Reagan must learn to advocate for himself, and believe he is strong enough to find a way to fit in. But, Reagan is a teen who is still trying to figure out how to make his first true friend. “It’s hard for me to make them, and I can’t really just go out there and make a friend just by saying ‘Hi’ because sometimes they just don’t want to accept me.”
Thousands of strangers, however, are listening to Reagan’s message. He hopes others will learn about acceptance and extending the hand of friendship to someone who needs it. His video has been viewed by many of you, and he is encouraged by the return messages of support and the words of thanks from the parents of other children living with PWS. “Thank you for your very kind messages,” he said, “and keep going strong.”