On July 15, Grayson Kohlwes from Colo celebrated his 6th birthday. He finished preschool and soon will be on his way to kindergarten. Grayson will have simple decisions to make for his first day of school. For instance; what backpack, what color of scissors, how many crayons and which lunch box.
Grayson’s parents Brad and Amy Kohlwes, however, will have many concerns and worries on the first day of school, like wondering, ‘Did he make it down the steps or fall at recess?’
For many parents, worrying about our children falling on the playground or stumbling down a step isn’t a high priority. But, keeping Grayson from falling became critical when they discovered he has muscular dystrophy.
According to the Mayo Clinic website, muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In muscular dystrophy, abnormal genes (mutations) interfere with the production of proteins needed to form healthy muscle.
There are many different kinds of muscular dystrophy. Symptoms of the most common variety begin in childhood, mostly in boys. Other types don’t surface until adulthood.
When Grayson was 3 years old, he broke his right femur. He was in a cast from the waist down for four weeks and didn’t walk until two weeks after the doctor removed the cast. “Grayson hasn’t walked normally since he broke his femur, ” said Amy. “We took him back to the orthopedic doctor a year after the broken femur, and they said it was fine. I questioned the pediatrician several times, and she believed it was from the broken femur,” she continued.
At the end of December, Grayson’s older sister, Callie, got hurt playing basketball. “We took her to a pediatric orthopedic to get her checked out,” commented Amy. ” While we were there, I asked the doctor if he could look at her little brother when we came back for Callie’s MRI results, and he said yes.”
The following month the orthopedic doctor gave Grayson an examination. The doctor ordered an x-ray on Grayson’s leg to see if the bone had healed properly. The x-ray showed the femur had healed perfectly. Next, the doctor had Grayson run down the hallway and climb stairs. “Children with muscular dystrophy don’t run well, and climbing is an obstacle,” added Amy. “The doctor then question Brad and I to see if we had any signs of muscle weakness in our family history. None of our family had any history,” said Amy. “The doctor ordered a blood test. A week later, he called and told me that Grayson had high muscle protein in his bloodstream, and he had high CK (creatine kinase) results. This was a sign of muscular dystrophy, and the doctor immediately made an appointment for Grayson at the University of Iowa.”
Grayson’s appointment was a week later. After his doctor evaluated him and ran a few tests, the doctor believed he had what is called Duchenne muscular dystrophy. “The only way to confirm what type of this disease Grayson has was through genetic testing. Nine weeks later, we received the confirmation. Grayson has Duchenne muscular dystrophy,” said Amy.
The Mayo Clinic website states: Duchenne muscular dystrophy is the most common form of the disease. Although girls can be carriers and mildly affected, it’s much more common in boys. About one-third of boys with (DMD) don’t have a family history of the disease, possibly because the gene involved may be subject to sudden abnormal change.
Signs and symptoms typically appear in early childhood and may include: Frequent falls, difficulty rising from a lying or sitting-up position, trouble running or jumping, walking on the toes, large calf muscles, muscle pain, and stiffness and learning disabilities.
Did Grayson show any of the symptoms? Amy responded, “Yes, his gait when he walks is different. When he runs, he pumps his arms and his legs, doesn’t move very fast. He has lots of problems climbing steps, and when he is laying on the floor, he has to roll over onto his knees and get up from there.”
After the results of Grayson’s many tests, it was time to meet with the doctors to determine their plan of attack. After carefully weighing their options, Brad and Amy decided to put Grayson on an experimental drug called edasalonexent. “Some patients choose to go on a steroid-like prednisone, but the side effects were stunting of growth, delayed puberty and behavioral problems,” added Amy. “We choose not to use a steroid.”
To help spread awareness of MD, Amy organized a 5/K - Team Grayson - muscle walk. The walk took place in Colo on Saturday morning, July 13, during the town’s annual Crossroads Festival. There were 377 participants registered for the walk, and the Colo Fire Department hosted a free-will donation breakfast, where all proceeds also went to the MDA.
“We were surprised, and overwhelmed by the support we received for Team Grayson,” said Amy. “Together, we raised approximately $14,000 to aid in research for a cure of MD.”
Anyone who knows Grayson can describe him as energetic, loving, funny and has a contagious laugh. He loves to eat chips and pepperoni, and he drinks lots of milk. He has shown courage, strength and bravery throughout all of his tests and now takes 20 pills a day, as Amy says, “just like a champ!”
As for what Grayson’s family will do next, Amy said, “We plan to give Grayson as normal of a life as he can have and still be a little boy, and my hope for his future is that he can keep his mobility. I want him to be able to do things that everybody can do.”
“Courage isn’t having the strength to go on. It’s going on when you don’t have strength.” — Napoleon Bonaparte