Local infant born with rare disease
Hayden Simcox was born to Mikayla Wright and Jordan Simcox of Priest River on Sept. 12. The couple learned on Friday that their baby was born with Zellweger syndrome, a rare disorder with no known cure. (Courtesy photo)
SANDPOINT — There were indications about halfway through Mikayla Wright’s pregnancy that something was wrong. What it was, however, was a mystery to the doctors.
“We were told it was something bad but they didn’t know what,” Wright said in a message to the Daily Bee.
It was when she went in to learn the sex of their baby that the doctors told her and the baby’s father, Jordan Simcox, that there was a problem, she said. Their little boy, Hayden Simcox, was born at 7:47 p.m. on Sept. 12. A little more than a week later, Wright said the doctors at Sacred Heart confirmed on Friday that the infant has Zellweger syndrome, a rare congenital disorder and the most severe form of conditions on the Zellweger spectrum.
There is no known cure for Zellweger syndrome, and Wright said Hayden will not live past six months.
“Jordan and I have been so blessed to be able to meet our son,” said Wright, who is a Priest River resident and 2017 graduate of Lake Pend Oreille High School in Sandpoint. “We know that there’s a reason why he’s here. We may not know why at this moment, but we will. He has brought happiness to our lives, and we don’t regret any of it.”
The signs and symptoms of Zellweger syndrome, according to rarediseases.info.nih.gov, typically appear in the first few hours or days of life and can include poor muscle tone, poor feeding, seizures, hearing loss, vision loss, distinctive facial features and skeletal abnormalities. Affected children also develop life-threatening problems in other organs and tissues, such as the liver, heart and kidneys, according to the site.
Wright and Simcox have spent every moment in the newborn intensive care unit at Sacred Heart since Hayden was born, and Wright’s mother, Stacie Ramsay, said via social media that the hospital has been “unbelievably accommodating.” Ramsay said while the family has been helping out as much as possible, the couple has “numerous” expenses piling up.
“As you can imagine, it gets financially overwhelming quickly,” Ramsay said, adding that they have set up an account at STCU for the couple. “She can use the funds for food and other items that they may need during this time.”
Anyone who would like to donate can do so at any STCU branch under “Hayden’s Heart Donation Fund,” or checks can be mailed to 477123 Highway 95, Ponderay, ID, 83852 under the same donation fund name.
Ramsay said this is the only account that will be set up through the family, warning that any GoFundMe or other crowdfunding accounts that may pop up are a scam.
“We want to thank our families and friends for being there through this devastating time,” Wright said. “Jordan and I can’t even explain how much love we have for our sweet Hayden. We just want people to keep praying for our son. And our family.”
Mary Malone can be reached by email at mmalone@bonnercountydailybee.com and follow her on Twitter @MaryDailyBee.