Bryce Thibodeau is a 3-year-old with a contagious giggle and more energy than all three of his siblings put together. But there’s something even more unique about him. Bryce now has a voice like he’s never had before.
When Bryce was born, he developed just like any other healthy baby. He crawled and walked without a problem, but when he was just 13 months old, his parents, Kelly and Brandon Thibodeau, began to worry when Bryce began to sleep for only two hours a day.
Doctors diagnosed Bryce with a behavioral issue, and said it could be cured with further training by his parents. For two years, the Thibodeaus tried everything suggested by doctors, and when Bryce remained nonverbal throughout the two years, the Thibodeaus knew there was something more that had to be done.
Desperate for answers, they took Bryce to Rochester, where he underwent genetic testing, going through MRIs, ultrasounds, sleep studies, speech evaluations and hearing evaluations. It was a long wait, but in January 2014 the results finally came in.
Bryce was diagnosed with a rare genetic disorder called Phelan-McDermid syndrome, caused by the specific disruption of a gene on chromosome 22. He is 1 of only 1,000 people in the world to be diagnosed with the disease. Most children who have been diagnosed often are not able to communicate verbally, and Bryce is one of them. Symptoms of Phelan-McDermid include seizures, sleep disorders, and intellectual disabilities. Seizures are expected around the age of 9, and those diagnosed have a life expectancy of 35.
After Bryce was diagnosed, the Thibodeaus decided to apply to Chive Charities, a non-profit organization that donates items to people diagnosed with rare diseases. What the couple didn’t know was that Chive would soon change their lives forever...
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