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.
When Chive Charities heard about Bryce, they were eager to help. Chive Charities provided Bryce’s family with an $11,500 grant to pay for the boy’s physical and speech therapy equipment, a trampoline and playground for his backyard, as well as one of Bryce’s favorite presents, a new iPad. The iPad Bryce was given has an application helping him communicate called proloquo2go. Kelly said the app communicates for him and even has an ‘about Bryce’ option to give his friends a personalized message from Bryce.
Chive also donated a therapeutic weighted blanket to the family, something that Kelly says has really helped Bryce sleep at night.
“He usually has to sleep in our bed with us, but the other night when Bryce slept with the blanket, he slept the entire night in his own bed. I checked on him in the morning and couldn’t believe he was still sleeping,” Kelly said. Because Phelan-McDermid causes Bryce to move constantly, Chive provided the blanket to Bryce to help decrease his anxiety and stress at night, and Kelly said its already helping Bryce get a good night’s sleep.
The grant is also sending the Thibodeau family on an all-inclusive trip to an International Family Conference in Orlando, hosted by the Phelan-McDermid Syndrome Foundation. At the conference, the Thibodeaus have the chance to meet and bond with other families affected by the genetic disorder, get educated, and spread awareness about Bryce’s disorder. They also get to meet Katie Phelan, the founder of the foundation, who they expected will give them strategies on how to deal specifically with Bryce.
For Bryce, every day is different, and some days aren’t as good as others. To cope with the bad days and celebrate the good days, Kelly created a Facebook page, Bryce’s Buddies, where she gives daily updates about Bryce.
The Thibodeau family says they are humbled by the generous gifts given to Bryce by the Chive Charity. With its help, Bryce now has a voice, one that the Thibodeaus hope to use to continue to inform the world about his rare disorder.
