'You fill our home with so much love': Christmas cards sought for boy with rare syndromes
Published Thursday, November 30, 2017 10:33AM PST
A Delta, B.C. family has a simple request for those looking for ways to spread Christmas cheer this season: Send a card to little Owen.
Six-year-old Owen Hill Davie has two rare genetic conditions that require round-the-clock care and supervision.
"All of his major organs are affected and globally he is significantly delayed," his mother, Stephanie Beharrell told CTV Vancouver this week.
Owen needs braces to keep his hips and knees from dislocating, but sometimes they keep him stuck on his back and he is unable to clear his own airway if he vomits.
"He needs assistance with toileting, dressing, eating and breathing. He cannot sit up and at times it's quite hard for him to have the strength to hold his own head up. Therefore, any position he is left in requires frequent visual checks," Stephanie said.
Owen has CHARGE syndrome, a complex genetic condition that causes problems including trouble swallowing and breathing, hearing and vision loss, heart defects and more.
He also has Kabuki syndrome, a rare disorder characterized by multiple abnormalities including distinct facial features and a short stature. Specific symptoms vary greatly, according to the U.S.-based National Organization for Rare Disorders, and many aren't noticeable at birth.
This was true in Owen's case. Stephanie said she had a "near textbook" pregnancy, with only a few complications after birth.
Owen was kept in hospital for 16 days then released, but at around six weeks, he started to have major issues with breathing.
"These complications kept us in hospital for 238 days," Stephanie said.
Six years later, he's living at home, but the boy has suffered serious regression in the last two years.
"Since 2015, we have started dealing with seizures, choking, aspiration and his knees dislocate upwards of 40 times a day," Stephanie said. Overnight, he's hooked up to an oxygen saturation monitor and a continuous positive airway pressure (CPAP) machine, and at times they have to give him morphine just to keep him comfortable.
Despite his challenges, something as simple as a brightly coloured card can make Owen smile and laugh. He loves paper and lightweight objects he's strong enough to hold.
So two years ago, his family issued a request for cards for Owen, posting on a Facebook page liked by about 100 friends and family members at the time.
They expected a few cards from people they knew. They were sent more than 8,000.
"We would spend two hours a day opening and reading cards to him. Nearly every card was different so there was always a texture, sparkle or shine to the card that would grab his attention," Stephanie said.
There were so many cards that the family carved out a special time to read them, something everyone looked foward to.
"He loved the music cards because every time you would open it he would surprise himself and laugh."
And the cards didn't stop when Christmas was over.
He was sent birthday cards, Easter cards, "thinking of you" cards, and Christmas cards again the following December. He received another Christmas card last week.
"It was amazing to see love pouring in from all over the world," Stephanie said.
Sending a card seems like a small gesture, but Stephanie said there are few things Owen enjoys. It makes them feel "incredible" that something as simple as a card can make him happy.
"To anyone who has sent a card to our sweet Owen, thank you. You fill our home with so much love. You help brighten the life of a little boy and your words bring much love to me," Stephanie said.
"You helped us get through some hard times by sharing about your situations and coping mechanisms. We cannot thank everyone enough for continuing to help brighten our son's challenging life."
With two other children, Owen's parents' hands are full.
One-year-old Nora loves to lie next to him during the day, and if he drops anything she races over to pick it up and hand it back.
And four-year-old Oliver is Owen's defender.
"He loves his brother and isn't afraid to speak up for him so he can have the 'same' experience as others," Stephanie said.
On Oliver's birthday, Owen made a sound that seemed like an answer to a question. Oliver put his hand on his mother's shoulder and told her he could talk, calling it "the best birthday gift ever," she said.
Oliver compassionate and thoughtful, she said, but is struggling to understand why Owen can't walk or talk, and needs to spend so much time in the hospital.
"At times when he hears sirens he fears for his big brother. We think this comes from nearly losing Owen to a seizure," she said.
"As parents we have learned now to control our emotions in front of our children even though it's incredibly frightening to watch your child seize and turn blue and grey."
Owen's parents help with his care, and he receives additional support at home and at school.
He started school in the fall, where he works with an educational assistant and has befriended the kids in kindergarten.
But while his parents are happy he's spending time with other kids, they worry about the risks that come with being out of the house.
Owen got sick in the fall, and was only able to attend about two weeks of class. Instead, he's spent nine weeks at home "recovering from a regular virus that you or I would likely only take a few days to get over," Stephanie said.
Fortunately, he was feeling well enough to go back to school this week to spend time with the friends he's made.
While there are difficult days, there are also happy moments in the family's life, many of which have been tied to the cards from friends and strangers.
So this Christmas, the family is again asking for a little hope, encouragement and laughter sent through the mail.
They ask anyone interested in sending a card to write to him at the following address:
Owen Hill Davie