Samantha and Kevin Jolicoeur sensed something was not quite right with their son, Gideon, from the moment he was born.
“He exhibited several unusual traits that puzzled everyone,” Samantha explained to PEOPLE. “The doctors were worried because he had an unusually large fontanel, a sacral dimple, and a high-arched palate, which made breastfeeding challenging.” (The anterior fontanel refers to one of the soft areas between the bones of an infant’s skull, while a sacral dimple is a small indentation located on a newborn’s lower back, as noted by the Mayo Clinic.)
In the early weeks of Gideon’s life, the couple observed that their baby was frequently irritable and cried a lot, which doctors attributed to colic.
“He seemed constantly distressed, as if he didn’t understand what was happening,” Samantha recounted. “One day, my husband decided to try and soothe him by blowing raspberries on his cheek. It was just a way to calm him, but it turned out to be so funny because every time he did it, Gideon would stop crying.”
Samantha posted a video on Facebook capturing the moment, featuring 3-month-old Gideon looking curious as Kevin kissed his face. The video has garnered over 250,000 views.
It wasn’t until four months later that the Texas couple discovered that Gideon was born legally blind and partially deaf due to a Peroxisomal Biogenesis Disorder. These disorders affect “all major systems of the body” and lead to developmental delays, as well as vision and hearing issues, and can even be fatal, according to the Global Foundation for Peroxisomal Disorders.
While most children with PBD do not survive past age 10, some have been known to live into late childhood or their teenage years. When Samantha and Kevin first received the diagnosis, a doctor informed them that their son would likely live for only a year.
“The first thing that came to my mind was, ‘My son is going to die, and there’s nothing I can do … We were truly powerless,’” Samantha told PEOPLE. “We went home and mourned the anticipated loss of our son. But as time passed, I began blogging and connecting with other families who had children like Gideon, and I started to understand … he might be one of those kids who lives longer than just a year.”
And he did. Now 11 years old, Gideon has continued to astonish his parents year after year. Samantha notes that “the awareness that we have more time with him has made life so much sweeter.”
Samantha shares Gideon’s journey and provides updates about her family on her blog, Life With a Happy Heart.
Watch the video below: