NW family asks for help making lasting memories in toddler’s final days
AI-generated summary reviewed by our newsroom.
- Family seeks donations via GoFundMe to cover funeral, memorial and transport costs.
- Avery, born 2023, faced Holt-Oram syndrome, heart failure and cerebral palsy.
- Family plans final outings and last moments before removing life support on Feb 14.
The family of a Hermiston child born “wrapped in blue, full of promise and potential,” and who has overcome insurmountable odds to live his best life, is accepting donations for end-of-life planning.
Two-year-old Avery Henderson will be compassionately taken off his ventilator on Valentine’s Day, said mother Nichole Maahs, 37.
The family is devastated, but hopes their “strongest Avenger” can find comfort, relief and freedom in a place “where he can finally be without pain and hardship.”
“Nobody should have to make this decision for their child, but I really do feel like Avery is struggling a lot,” said the Hermiston mother of three. “I mean, no parent wants to see their child in pain. I feel confident we’re making the right decision, but it doesn’t make it any easier.”
Their GoFundMe campaign aims to raise thousands to cover the child’s funeral expenses, memorial service costs and transportation for “Avery’s final journey.”
The family is also asking for prayers and support during this challenging time.
A strong spirit, a porous heart
Avery’s story is one of strength, hope and resilience. He’s been a fighter since he came into this world.
He was born April 1, 2023, and diagnosed with congenital Holt-Oram syndrome. Maahs said it typically shows up as a couple holes, but Avery’s heart was “like cheese.” He also developed bronchitis and pneumonia.
He was sent home with family in June, though his heart stopped in the car, and required a helicopter transport to Doernbecher Children’s Hospital in Portland, the Hermiston Herald reports.
He suffered seizures and a stroke as a result of the cardiac arrest. An MRI later confirmed that his brain sustained incredible damage as a result of his incident, family says.
That summer, he underwent the first of three major heart surgeries to improve his blood flow.
Avery has also been diagnosed with quadriplegic cerebral palsy, heart and respiratory failure, and his mother says he’s now blind and deaf. Despite living with a tracheostomy and ventilator, Maahs said, his infectious smile and lust for life has brought happiness to his family and everyone he’s met.
He’s felt the breeze of the Oregon Coast on his face, the thumping and beats of the band at their local church, and has felt the embrace of warm blankets.
“Even though they said he’s legally deaf and blind, he really does enjoy music. That’s probably the biggest focal point of his life,” she said.
“He loves things like balloons, especially bright colors... He really loves to have his hands held. He loves when you move his arms and feet because he can’t move them himself,” Maahs continued.
The family has been counting the holidays, the meaningful moments, the birthdays and family events.
Maahs’ favorite memory of her son has been their Halloweens spent together.
That first holiday was his first day out of the pediatric ICU — he had spent several months there — and he was dressed as Chewbacca from “Star Wars.” He spent his second Halloween dressed as a NASA astronaut, his tubes and wires incorporated into his costume.
One last journey
Maahs said Avery has made “no real meaningful progression” in recent months. In fact, his condition has worsened and he’s no longer cognizant.
Doctors say he doesn’t have any “global processing,” though the family can tell when he’s upset. He lives with discomfort from hip dysplasia and digestion issues.
The family has found comfort through their faith and overwhelming community support.
Coworkers have donated sick time, fundraised with bracelets, and donated a Captain America shield that has lent an identity to Avery. Maahs’ children, 12-year-old Draven and 5-year-old Veda, have been supportive, too.
“Despite the challenges he faced, Avery emerged as a true hero among us,” Maahs wrote.
“We’ve had a lot of community support. A lot of people have driven to Portland to pray for him, to see him. We’ve had a lot of support,” she told the Herald.
The family has a list of “last” activities to do with Avery before they say their goodbyes. They’ll spend the coming weeks adventuring, spending time together and trying new things.
Last week they spent time in a photo studio taking family photos. She and Avery’s father, Jon Henderson, 41, are planning outings to the coast and to an aquarium.
Maahs says even though he’s struggled, he’s found a way to surpass their expectations.
He’s their fighter, their “little warrior,” their Avery.
