Sue McDaniel remembers quite vividly the moment she and her husband, Greg, found out their son had a rare genetic disorder.
At a year old, their son Jared, now 28, was diagnosed with cri du chat syndrome, a rare genetic disorder caused by the deletion of chromosome 5. The symptoms of cri du chat usually include a cry that sounds like a cat, delayed development, distinctive facial features, small head size, widely-spaced eyes, low birth weight and weak muscle tone. The disorder also causes cognitive delays.
“We were told he may never walk, talk, or find humor,” McDaniel recalled about what doctors said when they told her the diagnosis. “They said we should put him in an institution.”
The McDaniels decided firmly against putting Jared in an institution. The couple had already lost a child due to another rare medical condition, and they couldn’t bare the heartbreaking thought of losing a second child as well.
Five years after Jared was born, the couple had a healthy third child, Erica, who they call their “miracle.”
Prior to Jared’s diagnosis, the McDaniels didn’t think anything was wrong. As an infant, Jared’s feet were cast to correct his feet from growing inward, but there were no other major telltale signs that indicated it was something as serious as cri du chat syndrome.
1 in 50,000 children are born with cri du chat syndrome
Most with the syndrome are unable to walk, talk, or communicate, but Jared is still able to walk and use sign language to communicate, as he is non-verbal. As Jared’s primary caretaker, Sue says her day starts the minute Jared wakes up. She has to feed him, bathe him, dress him, and change his diapers.
“It’s a full-time job,” said Sue, who was born and raised in Puyallup.
Sue and Jared take joy in the small things in life. She says his favorite things to do are going to his grandmother’s house, go to McDonald’s, watch trains go through downtown Puyallup, and enjoy the scenery at Bradley Lake Park. At home, he loves watching “Cops,” “The Big Bang Theory” and basketball. They’ll also often take him to go watch basketball games at Pacific Lutheran University.
“He loves all of it,” she said. “Wherever we go, Jared goes.”
Each year, the McDaniels go as a family to Hawaii in June, and Disneyland for New Year’s. As soon as the holiday decorations come out, Jared knows a trip Disneyland is coming soon.
“He’ll start signing mouse to us (by tapping his nose),” Sue said. “He loves Mickey Mouse, and he knows when we’re going.”
The McDaniels have been married for 32 years, but since Jared was born, the couple often takes turns watching Jared while routine errands are attended to since they don’t have a caregiver.
The McDaniels are so dedicated to Jared’s care, their home on South Hill was designed with as little steps as possible, and is wheelchair accessible should Jared come to rely on one to get around. With Jared’s bedroom on the first floor, the second floor was designed for an in-home caretaker to live with Jared should something happen to his parents or for when they can no longer care for him by themselves.
Patience is among the most important things Sue has learned when it comes to caring full-time for a disabled child.
I’ve really had to learn how to be patient. I’ve also learned that life is so much more than screaming kids or fixing something they broke.
Sue McDaniel, mother of a special-needs child
“Patience are so important,” she said. “I’ve really had to learn how to be patient. I’ve also learned that life is so much more than screaming kids or fixing something they broke. Life is a treasure, and every minute counts.”
But she has also learned to embrace the relationships and people she meets from the family’s active participation in the nonprofit 5p- Society (five p minus), the parent support group for families with an individual with cri du chat syndrome.
McDaniel has also taken that activism to the state level, as she successfully lobbied Gov. Jay Inslee to proclaim May 5 each year as Cri Du Chat Syndrome Day.
International Cri Du Chat Awareness Week ran from May 1 to 7, during which those affected were encouraged to spread awareness by wearing striped socks — one long and one short — representing the whole 5th chromosome and the deleted 5th chromosome.