Gideon Jolicoeur, 4, was born with a rare condition that impacts his hearing and eyesight — so his parents cuddle him with kisses

By Char Adams
December 22, 2017 03:52 PM
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Samantha and Kevin Jolicoeur knew something was off about their son Gideon from the moment he was born.

“He had several oddities that nobody could figure out,” Samantha tells PEOPLE. “The doctors were concerned because he had an overly large fontanel. He had a sacral dimple and a high-arched palate that made it difficult to nurse.” (The anterior fontanel is one of the soft spots between the bones in an infant’s skull and a sacral dimple is an indentation in the skin on a newborn’s lower back, according to the Mayo Clinic.)

During the first few weeks of Gideon’s life, Samantha and Kevin noticed that their baby was often fussy and cried a lot — doctors chalked it up to colic.

“He was so upset all the time, like he didn’t know what was going on,” Samantha says. “So one of the things my husband decided one day to do to try to calm him down was to blow raspberries on his cheek … My husband was just trying to find a way to calm him down and it was hilarious because every time he did it, Gideon would stop crying.”

Samantha shared Facebook footage of the incident, showing then-3-month-old Gideon sporting an intrigued expression when Kevin would kiss his face. The clip has been viewed more than 250,000 times.

It would be four more months before the Texas couple learned that Gideon was born legally blind and partially deaf due to a Peroxisomal Biogenesis Disorder. These disorders impact “all major systems of the body” and result in developmental delays, vision and hearing abnormalities, and even death, according to the Global Foundation for Peroxisomal Disorders.

Although most children with a PBD do not live past the age of 10, some have been known to survive into late childhood and teen years. When Samantha and Kevin first learned of Gideon’s condition, a doctor told the couple that the little boy would likely live for only a year.

Gideon
| Credit: Samantha Jolicoeur/Life With a Happy Heart

“The first thing I thought was, ‘My son’s going to die and I can’t do anything … There’s really nothing we could do,’ ” Samantha tells PEOPLE. “We went home and grieved the imminent death of our son. Over time as I started to blog and meet more families who had kids like Gideon, I started to realize … he might be one of those kids that does live a little bit longer than a year.”

And he did. Gideon, now 4, kept surprising the couple year after year and Samantha says “the realization that we did have more time with him just made life more sweeter.”

Samantha has shared Gideon’s story and gives updates on her family through her blog, Life With a Happy Heart.

From left: Laynie, Gideon and Josiah
| Credit: Samantha Jolicoeur/Life With a Happy Heart
Credit: Samantha Jolicoeur/Life With a Happy Heart

In photos and videos, little Gideon is shown smiling and having fun with his older sister, Laynie, 8, and his 17-month-old brother Josiah. Although Gideon’s health and basic motor functions have begun to decline, the Jolicoeurs are cherishing every moment they have with the little boy.

“Gideon is still a happy child and I think that’s greatly in part to the fact that we spend a lot of time loving on him and engaging him,” the mom of three tells PEOPLE. “Obviously, he’s never going to play like a normal child, so we encourage our children to love him differently and to play with him in different ways.”

She adds: “It’s a pretty crappy disorder. But in spite of all that, most of these children, they smile and they laugh and they love more deeply because the only way they can do that is through touch.”