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ROY — A young boy from Roy who has a rare genetic condition is about to reach a milestone doctors didn't think he'd achieve — turning 8 years old.
Merrick Kinser was born with 1p36 deletion syndrome, a chromosome disorder that typically causes severe intellectual disability. Most affected individuals do not speak, or speak only a few words.
Merrick wasn't expected to live past his first birthday, according to his mother Carina Kinser; however, with a lot of work and patience from doctors and therapists, he has been able to progress.
To celebrate Merrick's accomplishment, his family is hosting a toy drive to benefit organizations that helped him along the way: Primary Children's Hospital, McKay Dee Hospital and the Roy Fire Department. The idea for the project came from Merrick himself.
"People give us tons and tons of gifts for his birthday, but mentally he doesn't quite play with them, so we've collected a lot of teddy bears," his mother said. "I was like, 'What are we going to do with all of these?' He said, 'Give them to hospital,' so I was like, 'That's a dang good idea. Let's do it.'"
Merrick's goal is to collect 80 teddy bears since he will turn 8 on May 11, and 70 trains or other vehicles. His other wish is to get a big sheet cake from Sam's Club or Costco and take it down to the Ronald McDonald House and Primary Children's to serve the families there and have them celebrate with him.
"We've been trying to teach him about giving back to the community as much as possible and what that means," she said. "We didn't think he quite understood it too much, but apparently he does. He offers to give stuff to kids all of the time."
After Merrick was born, he was constantly in and out of the hospital to tackle RSV, pneumonia, low muscle tone and a host of other challenges. With the help of doctors and therapists, he has learned how to communicate and respond to sign language. He started walking about three years ago.
He still visits the hospital weekly, meeting with a team of about 25 specialists throughout the year.
"Every day is a constant battle, but the blessings outweigh that majorly because every day we see something new that he does that just surprises us," his mother said.
She said having access to toys during long days in the hospital can make a huge difference. They want to collect toys that appeal to both genders, so every child can find something they like.
"When you're sitting in those hospital rooms… you never realize it until you're there, but some of those waits can be 10 minutes or 20 minutes and some can be four to five hours," she said. "If you don't have that certain toy that your child is drawn to, it can definitely be hell while you're there."
In addition to toys, the Kinser family also hopes to collect hats and blankets for cancer patients. They recently experienced a cancer scare with Merrick as he was tested for non-Hodgkin's lymphoma.
"We really had to educate ourselves on what may be and what the outcome may be," his mother said. "We never really realized the need for the kids in the cancer unit there. We have a little cousin who also had cancer, and she beat the odds, but watching her in her hospital bed and missing school and losing her hair... We would like to try and collect as many hats and blankets (as possible) because they get so cold during treatment, especially without their hair."
While the teddy bears and trucks can be gently used, items for children being treated for cancer need to be new. Anyone interested in donating items to the birthday drive can contact Kinser by sending a message to makkiesmom@gmail.com.
"We know it's a random request, but for Merrick every day is a blessing and every little moment counts for us," she said. "By (donors) adding into that it's just making it that much more special for us celebrating his birthday and the upcoming milestones that he is going to be having."
Updates from the Kinser family can be found on the Facebook page "Merrick's Journey."
