Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about what someone else has been through can help you figure out your situation. Their story may be just like your story and it feels good to know that someone relates to you.
Jonathan and Bryce are on the higher-functioning end of the Hunter syndrome spectrum. They both wanted to share their stories. Both boys are creative and have positive attitudes.
Jonathan was 4 years old when doctors discovered he had Hunter syndrome His parents wondered about some unusual signs and symptoms and kept asking questions. Jonathan was short in stature, his spine was curved, his fingers curled, and his airway became restricted. Hunter syndrome was known to be in Jonathan’s family history, so his parents suspected that would be his diagnosis. Sadly, he’d already lost two of his uncles due to the disease.
Neither Jonathan nor his parents let the disease define him. He follows his dreams and does what he loves despite Hunter syndrome. Jonathan is crazy for rock ‘n’ roll, so he formed a band and named it “Undefined.”
Bryce was also diagnosed at the age of 4. Bryce’s gymnastic instructor alerted his parent’s that he had limited range of motion. He was not able to participate in tumbling because of this. They realized that it was something wrong beyond the normal developmental issues. It took six months and visits to various physicians in order for Bryce to be diagnosed with Hunter syndrome. He is passionate about drawing cartoons. He even has his own comic strip.
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