An 8-year-old deaf-blind boy with a rare, terminal condition who was told he wouldn’t live past his first birthday is growing up in a happy home thanks to his parents’ determination in making him feel and experience love from all angles.
Gideon Jolicoeur from Rockwell, Texas, was diagnosed with a degenerative genetic condition called peroxisomal biogenesis disorder (PBD) at 7 months old. He is legally blind, profoundly deaf, and has reduced mobility.
Gideon lives with his parents, Samantha and Kevin Jolicoeur, and siblings, Laynie, 11, Josiah, 5, and Nya, 3.
Both former teachers, Samantha and Kevin were ecstatic to learn they were expecting their second child. Samantha’s pregnancy was “typical.” But on the day Gideon was born, Jan. 18, 2013, doctors suspected something was wrong with him.
“During labor, his heart rate began dropping with each contraction. The doctor made the decision to do a Caesarean section,” stay-at-home mom Samantha told The Epoch Times. “The first time I saw Gideon, it was only for a few brief seconds.”
Riddled with fear, Samantha waited two hours before her beautiful baby boy was placed in her arms.
“Unfortunately, he had several oddities that didn’t fit into a diagnosis,” she recalled. “We took him home on day five, not knowing what was really going on with him.”
Later, a diagnosis of PBD at 7 months gave a name to Gideon’s struggles.
Explaining his condition, Samantha said that every child is different, but peroxisomes exist in every cell of the body, and Gideon’s don’t work properly. His PBD means he has degenerative deaf-blindness, and he can’t walk, crawl, or sit independently owing to low muscle tone.
The day Gideon was diagnosed, the helpless, heartbroken couple said they shared a profound moment in their geneticist’s office.
“With tears still streaming down our faces, we both agreed that any children we have don’t belong to us anyways, because they’re on loan,” Samantha said. “They’re truly a gift from God, and He loves them so much more than we do.”
The couple named their son Gideon, meaning “mighty warrior,” believing that God created him for a purpose. But before they could get their heads around his diagnosis, they were hit with yet another blow: he might not survive his first year.
“It was the death of a dream for us as parents,” Samantha said. “We decided fairly quickly that whatever time God gave us with Gideon, we were going to make the most of his little life. So I started a blog.”
Within days, the mother of an 8-year-old child with PBD contacted Samantha to connect her with a specialist in Omaha, Nebraska, who had a different insight, sharing that peroxisomal disorders are on a spectrum.
After in-depth genetic testing, the couple learned that Gideon has a “moderate” form of PBD. “According to the doctor in Omaha, Gideon’s life expectancy could range anywhere from 2 to 20 years,” said Samantha.
Life at home in Rockwell was soon filled with challenges, as Gideon’s needs diversified.
“Gideon can do absolutely nothing for himself,” Samantha said. “He requires the same care as an infant ... feeding, diapers, baths, therapy, moving him from one activity to the next, all on his time schedule.
“Like most kids with PBD, Gideon has trouble eating, so all his food is pureed.”
In 2015, Gideon suffered seizures for five months. However, Samantha credits Charlotte’s Web Hemp Oil for abating them. She considers her son “one of the lucky ones” for having only three hospitalizations in his eight years of life.
Today, she feels her family has landed upon a winning formula and describes Gideon as “the most chill kid” she knows.
Describing his personality further, Samantha said he loves to touch, being in the water, holding onto a vibrating toy, and car rides with the windows down to feel the breeze on his face.
Meanwhile, nurse recruiter Kevin has kept his beard long as Gideon loves to caress it; and he “recognizes” his father this way.
Apart from the challenges in caring for Gideon, Samantha shares some of the best parts of being his parent.
“The best part of being Gideon’s parents is having a front-row seat to watch how God is using his life,” she said, “not only to impact us, but also a world that Gideon will never fully know nor understand.
“He expresses pure joy in spite of the challenges he faces. He challenges us to see past our own selfishness and to live life with a happy heart, no matter what we’re facing.”
Come what may, the couple has faith in the higher power as they strive forward amid the challenges.
