Previous Next
Kyle

No matter what, I'm here for Kyle.

It’s hard to know how you’ll react when unexpected news comes your way.

We’ve likely all seen movies or TV shows where something negative happens, and the person jumps straight into action (fight).

While that’s the most commonly depicted, it’s not the only reaction people have to unexpected events. They could also try to get away (flight), stand in stunned silence (freeze), or try to be overly helpful or appeasing (fawn). 

These are all real-life trauma responses, and we’ve all likely relied on one or all of them throughout various moments in our lives. Maybe some more than others.

After her son Kyle was born, Miki would spend the next year of her life in fight or flight mode, heavily leaning on the fight. She wasn’t physical or aggressive in any way, but a mother bear protecting her cub - absolutely. She was his advocate through and through.

Kyle is her youngest child, and from the moment he entered this world, he was battling for his life.

“The first 12 days after he was born, I went back and forth to the ER so many times,” Miki shared. “I couldn’t understand why he was crying so much and not able to eat or keep his formula down. But I couldn’t get an answer. While watching my newborn baby lose weight in front of my eyes, all I could do was cry and pray, ‘Lord, please don’t let my baby die.’”

Doctors diagnosed him with failure to thrive, a blanket term that means a baby isn’t growing or gaining weight as he or she should. It was kind of a non-answer answer and certainly didn’t come with a road map or instructions on how to help him.

“It was like a fly trapped in a jar,” Miki told us. “I was screaming and no one could hear me.”

Eventually, genetic testing revealed that Kyle also had a rare medical condition called Angelman syndrome, which primarily causes delayed development, problems with speech and balance, intellectual disability, and, sometimes, seizures. People with Angelman syndrome often smile and laugh frequently, and have happy, excitable personalities. Much like Kyle.

But that day in the hospital when they got his results, the doctor looked at Kyle’s parents and delivered some sobering statistics. “Sometimes, this sort of news tears couples apart,” they said. “Because one might not be able to handle it.”

Miki stared long and hard at the doctor, then at her partner beside her. Then she squared her shoulders, set her jaw, and replied, “It’ll be challenging, and if his dad stays, he stays. If he goes, he goes. But I’m here for Kyle.”

For the last 20 years, she’s done just that, and almost entirely by herself. (Kyle has an older brother in college who helps when he can, but Miki is most often on her own.)

Kyle graduated from high school a couple years ago and is now in a program that’ll serve his needs until age 26. “He always participated in school with a good attitude, and they considered him to be popular,” she laughed. “He is always smiling, loves music, and will dance around on his knees, bopping to the beat.”

She told us how Kyle is non-verbal, but will adamantly shake his head “no” if he doesn’t like something you’re doing or asking him to do. He’s ornery, but funny, and has been relatively healthy despite his challenges. He’s never had a tube for feeding and uses a walker or his knees to get around the house.

But he does still require a high level of care, and that never slows or goes away.

Miki works full-time and is his primary caregiver. She also hasn’t been on a vacation since she was 29 years old. That doesn’t mean she’s complaining - far from it.

“He’s overcome a lot of obstacles and some things, he’ll never overcome,” she said. “But God answered my prayer…my son is alive today. I love him with every bone in my body. We have challenges, but I do my best.”

Over the years, Miki has reached out to others for help, but people understandably fall off over the years. As he’s grown and gotten heavier, transporting him has been even harder. 

“Depending on other people for help has always been a problem, and having to pay people to help transport him is even more devastating when someone asks for a ridiculous fee,” she explained.

“I want to be able to take him to his appointments, as well as fun things like the park or out for a ride. We just aren’t able to do those things right now.”

She continued: “I’m hoping soon enough, we’ll get assistance with a medical van, because long after I’m no longer living, my son will need to be transported thoughout his life.”

Well Miki, “soon enough” is today. 

We have an incredible community of donors who give anywhere from $10 - $200 or more each month in direct support of recipients like you and Kyle. Through those donations, we’ve funded 227 wheelchair-accessible vehicles over the past 12 years. Make this 228.

Our donors generously funded the full cost of a silver 2021 Chrysler Voyager with wheelchair accessibility. We also asked them for a little more in the form of a large adaptive tricycle to give Kyle some freedom and independence - and maybe to give his mom a chance to drink some hot coffee while he circles the street.

A well-deserved break. In total, the impact was $52,000

Don’t miss her reaction when we shared the big news:

We never know how we’ll react to unexpected news. Fight, flight, freeze or fawn. One of them. All of them. But what we can say, is that when someone is facing the unexpected, we know exactly the community to be there with them: Chive Charities and our donors. Become part of our family of supporters and DONATE HERE.


Kyle's Updates

Check back soon for updates!

?