My son hauled a** on the ball field tonight. Can’t tell you how proud he makes me and inspires me to be a better man. Love you buddy!
- Ross Carothers
At first glance, this message could be written by any proud dad on a summer day. Though Ross Carothers immortalized the moment on social media, he’ll keep the moment burned into his memory, too. That moment will join many others, all cherished, all special.
The Carotherses learned early on that the moments you remember aren’t always the positive ones and that each day brings another battle. “Twenty weeks into my pregnancy the doctors found a malformation in the frontal lobe of my son, Mikey's, brain,” says his mom, Brittany Carothers.
After multiple tests and a lot of waiting, doctors diagnosed Mikey with schizencephaly, a brain malformation in which abnormal slits or clefts form. Schizencephaly can cause symptoms like seizures, problems with brain-spinal cord communication, partial or complete paralysis, or hypotonia.
“The doctors couldn't definitively talk about severity because he was still in my belly. We'd have to wait until he was born to tell how serious the condition was going to be,” Brittany recalls, “So we just made the best of the pregnancy and tried to enjoy every minute.”
In the beginning we were being told about some birth defects with scary names that no parent should ever Google. The outlook wasn't good. The day my son was born was the greatest day of my life, but it was clouded by fear and complete helplessness.
- Ross Carothers
The Carotherses didn't have any issues or notice any differences in Mikey until he was about 6 months old, when he wasn't hitting typical milestones. They were enrolled in the school district's in-home therapy program, which referred them to Gillette Children's.
Once there, Mikey was diagnosed with cerebral palsy (CP)—caused by the schizencephaly. CP is a neurological disorder which affects body movement and muscle coordination. To help measure the gross motor skills of children who have cerebral palsy, there is a tool called the Gross Motor Function Classification System (GMFCS). The GMFCS has five levels, Level I being the least severe and Level V being the most severe. Mikey is classified as a Level IV, meaning it’s unlikely he’ll walk without assistance or specialized equipment.
Slowly, the Carothers family learned to measure milestones differently. They chose to measure their time in smiles. “Mikey is always such a happy kid, he loves people and other kids and loves to giggle! If you can be silly and make Mikey laugh, you'll become instant buds,” says Brittany.
Mikey has a smile that could put the sun out of business! Mikey just being his own goofy self makes things a lot easier for us as parents. He brightens the darkest of days for all of us.
- Ross Carothers
The Gillette Assistance Program (GAP) helped cover the parts of Mikey’s medical care that insurance didn’t. Funded by the generosity of donors to the hospital, GAP helps families who need care at Gillette but have difficulty affording it. Soon after they got to Gillette, Mikey started speech and physical therapy. After almost six years, it still hasn’t lost its charm. “Mikey's therapists are so amazing, and he looks forward to going to his appointments every week!" Brittany says. "It was at therapy that we first learned about the possibility of an adapted bike for Mikey.”
Philanthropy also helped Mikey get his first adapted bike. This was the first piece of equipment that allowed Mikey the freedom to go where he wanted to go without any assistance. “Seeing the look on his face and hearing the laughs as he chased us on his bike was priceless! The bike keeps Mikey's legs moving and is a huge part of therapy we can do at home,” Brittany says.
I’d be lying if I said it didn’t break my heart not being able to see my son play at the park or come tearing through the house covered in mud. That pain weighs heavily on a father’s mind. But seeing my boy’s face light up when he laid eyes on his first bike, it reminded me that he’s going to be just fine. Strapping Mikey in the bike today and seeing him use his legs on his own brought tears to my eyes. That bike is by far the best load my Chevy will ever haul home.
- Ross Carothers
After getting a flyer in the mail about the annual Gillette Pedal in Place fundraising event, the Carotherses staked their claim. “We were one of the few families to participate in the first-ever event in 2013. We thought that it was a great way to raise money and give back to support kids just like Mikey! Now we go every year,” says Brittany.
To date, Team Mikey has raised more than $21,000 at Pedal in Place, helping families afford adaptive bikes and other equipment. “We are so blessed with a huge family to love and support him. Everyone is rooting for him, so we’re happy to give back to Gillette,” she adds.
It's not easy for me to ask for help. I can be a very proud man. My son has taught me many things in life without even speaking. The first thing that comes to mind is unconditional love. The second is humility. Always be grateful for what you have and don't be afraid to ask for help.
- Ross Carothers
With the help of the community, Mikey recently got his first power wheelchair. And though the chair itself brings a few challenges, like a specialized van and a home big enough for Mikey to maneuver the wheelchair, for now the Carotherses are taking it one smiling day—and one happy birthday—at a time.
I’m having a hard time believing my little bud is almost 6 years old. It’s been quite a ride, a lot of laughs and a lot of tears. Any time I speak of my boy I get pretty choked up. This little guy has taught me so much about life, acceptance and love. This kid is without a doubt my hero. I am without a doubt his biggest fan.
- Ross Carothers
Thanks to generous donors, in 2016 the Gillette Foundation paid out more than $1.5 million towards research at Gillette as well as care through the Gillette Assistance Program (GAP). Over 250 patient families like the Carotherses received help from the GAP last year.
You can donate to the Unrestricted Fund, which includes the GAP, here. To learn more or donate to the GAP, contact Anna Rodell at 651-229-1754 or AnnaRodell@gillettechildrens.com.
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