Mom and dad share memories of bucket list baby
Corbin McHenry passed away from rare genetic disorder
He fought a rare genetic disorder for 135 days, and his story inspired hundreds of thousands on social media. But 4-month-old Corbin McHenry passed away over the weekend.
Despite the loss, Corbin's parents are taking time to celebrate his life.
"Strong, perfect, genuine- just an amazing little boy," said Corbin's mom, Kara McHenry.
Family and friends gathered at St. Gabriel Catholic Church in Greenville Monday for Corbin's funeral. The baby boy passed away Saturday morning, less than three weeks before turning 5 months old.
"It was sad to see him passing," said Corbin's father, LCpl. Shane McHenry. "But it was happy because I know he was going to a better place where he wouldn't have to be hooked up to machines, where he'd be able to walk around and talk."
The McHenrys, who live in Havelock, said their son was diagnosed with a rare genetic disorder call Trisomy 13 while in utero. The National Institute of Health defines the disorder as a chromosomal condition that leads to severe intellectual disability and physical abnormalities. Trisomy 13 occurs in about one in 16,000 newborns.
Doctors said Corbin had less than a 1-percent chance to live. But Corbin defied the odds and was born on April 4, about seven weeks early.
"Beautiful, perfect and amazing.[He's] everything we could have hoped for and more than we thought we would ever get," Kara said.
Knowing everyday with their son could be their last, the McHenrys created a bucket list for little Corbin- a list of simple pleasures in life, such as going to the zoo and flying on a plane. On Facebook, hundreds of thousands of people followed Corbin as he checked off the items on his bucket list.
"Every day was perfect. Every day was another amazing day with my son who showed everybody he was going to fight," Shane told NewsChannel 12.
Some of the most recent things that Corbin was able to check off his bucket list include meeting his pet dog, Zeus, and going outside for the first time.
"He was in his stroller, had his sunglasses on, was awake, enjoyed it, felt the breeze on his face," Shane recalled.
After Corbin passed away Saturday, his parents posted the following message:
First night in 135 days I will not be posting a "birthday photo". Instead of turning this into a moment of sadness, I decided I'd post again, as it's become a routine in my life and Corbin's. I thought I'd share another photo of Corbin to make my night feel complete.
I'd also like to thank each and every one of you. Your support, kind words, and prayers are extremely comforting in our time of need. God bless each and every one of you!
(Photo Courtesy: The McHenry Family)
The McHenrys said although their son has passed away, his fight is far from over. The family plans to continue raising awareness of Trisomy 13, because that's what Corbin would have wanted.
"He found his life's purpose and that's all we could really ask for," Kara said. "He really lived. I think it just leaves me at peace that he's up there and he's happy. That's what was really important to us."
The family is asking those who wish to support Corbin to donate to:
Hope for Trisomy 13 & 18,
P.O. Box 921
Springtown, TX 76082 (Hopefortrisomy13and18.org).
Corbin's complete bucket list:
- Go to the zoo
- Be in the media/on tv
- Fly on a plane
- Go in the water
- Go to the beach
- Travel to another state
- Eat by mouth
- Go to a professional sports game
- Ride a ride at an amusement park
- Say a word
- Be in a marathon
- Meet someone famous
- Go to a museum
- Slide down a slide
- Pet a giraffe
- Go to Disney World
- Go to the movies
- Go to school for a day
- Have something named after you (street sign, etc.)
- Discover your life's purpose!
According to "Medline Plus," more than 80 percent of babies born with Trisomy 13 die within the first year.
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