Easter Seals aids local family
Nicholas Yates wants to be treated like everybody else.
The Mossville Grade School third grader does pretty well keeping up with his 10-year-old classmates, considering the challenges he has faced in just one short decade.
Diagnosed with Duchenne muscular dystrophy at just 3 days old, Nick has benefitted greatly from Easter Seals.
His mother, Linda Basso, said she would not know what to do without the local agency.
Learning the facts
Basso knew for many years that this genetic hereditary muscle disease ran in her family.
Her second cousin’s son and her uncle, who lived only until he was 30, both died from MD. The second cousin’s son’s DNA matched Basso’s. That meant her children had a 50/50 chance of inheriting the mutant X-chromosome gene.
Pregnant with her first child, Basso had a sonogram and requested a DNA test. As a carrier of the disease, Basso was well aware it could be passed to her children.
When her first son, Louie, now age 14, was born, she was delighted he was healthy.
But when Nick was born Oct. 17, 1997, a blood test revealed his DNA matched hers.
Genetic counselors called her and Nick’s father, Kirk Yates, to give them the results. Basso said her first instinct was grieving.
“I know that we grieved for that news,” she said. “It’s not the kind of news any parents want to hear. The family came over. It was almost like someone had died.”
After contacting the Muscular Dystrophy Association, she received tons of mail.
“I remember sitting on my bed with all this information around me and thinking, ‘Oh, I can’t do this.’”
She had a few choices, however. At the MDA clinic, 6-month-old Nick had a needle muscle biopsy.
After three long weeks of waiting, four genetic counselors called with the results. Nick’s disease was the most common type of childhood MD, Duchenne.
“We started talking about physical therapy, and they recommended physical therapy at Easter Seals,” said Basso.
At 9 to 10 months of age, Nick started therapy once a month. The organization has been outstandingly supportive and helpful, Basso said.
Easter Seals helps
“Whatever part of anything I need, they will provide or get you that information,” said Basso. “Easter Seals keeps you on task and in line of sight for the goal.”
At therapy on the off months, Nick goes to the weight room and walks on the treadmill. Then he tackles the bench machine they call a rocket.
“They have really cute techniques to get the kids to do the stuff,” said Basso.
One machine Nick uses looks much like a small big wheel. He rides the bicycles and gets in the warm water pool with his therapist, Erica, and his father.
“The warm water is good for his lungs,” said Basso. “It aids his muscles so he can breathe better.”
Every six months, Nick’s muscles are measured, and staff at Easter Seals test his gross and fine motor skills.
“They test every single thing,” said Basso.
At Mossville, Nick also receives physical therapy twice a week.
“Between school and Easter Seals, he gets plenty of exercise,” said Basso.
At his last physical therapy visit, Erica recommended starting the wheelchair acquisition process through MDA, since it takes about a year.
“It’s because his muscles are deteriorating,” said Basso. “He has trouble getting upstairs.”
Basso also knows that by about age 10, progressive muscle weakness requires the use of a wheelchair.
Nick has been kept informed about what he calls his “disease” over the years.
“The pulling up motion is hard for him, and he has to grip with his fingers really hard.
He does fall four to five times a week. He needs to try and make the effort like any other 10-year-old,” said Basso. “He gets exhausted easily. At school, he has a pogon chair, and his buddies push him in it.”
Living life each day
As many 10-year-olds will admit, Nick would rather be somewhere else other than school. Yet he said he is good at math, science, reading and spelling.
“I like recess the best,” said Nick.
His hobbies include video games, the computer, playing with his three dogs — Chica, Charity and Dallas — and playing with his friends, Parke, Madison, Skye, Alec and Geoff.
An animal lover, he also has two turtles, Shrek and Fiona. Spiders, however, spook him, but, oddly enough, he loves sharks.
He has quite a Pokemon card collection, and on TV, he prefers Star Wars, Pokemon, Transformers and Digimon.
He also is fond of his teachers, Carol Fravala and Angela Gall.
He is a Cub Scout in Den 7, Pack 54 at Mossville and eats more than his fair share of two favorites, pepperoni pizza and bacon.
On the other hand, he is a fan of the Mossville Grade School salad bar, “except on hot dog and pizza days,” said Nick.
Basso said Nick has a really big heart, yet the resilient young man is not afraid to speak his mind.
To illustrate, she told about a time when Nick was 4 and his grandmother was fighting cancer.
“During the bouts of chemo, she lost her hair and wore a scarf around her head. It was very patriotic,” said Basso.
“Nick asked her, ‘Where’s your hair?’ and she said, ‘Under my hat.’ He told her, ‘Take your hat off! Now, leave it off, you look better.’”
Basso has grown her hair for Locks of Love, and Nick noticed the difference between his mom’s head and his grandmother’s.
“You have a lot of hair,” he told his mom, and, turning to his grandmother, he said, “and you’re beautiful.”
Asked what his one wish would be, Nick said he would like to be a dolphin. “I love dolphins,” he said.
Basso said one of her wishes is for Nick to be able to swim with the dolphins.
“He’s a fish,” said Basso. “He’s really better in the water than on land.”
On the ground, Nick has a quick response when he falls. “I’m alright!” he yells.
But, without the help of Easter Seals, Basso said she does not know how she would have made it this far with Nick’s MD.
“Thank you for Easter Seals,” said Basso. “I haven’t given up hope on Nick. They’re very close to finding a cure. God, they’re great. They’re great. What a great resource for parents.”
She knows the future will not be easy for her, but especially not for Nick.
“I say it like it’s a pain for me, but he’s the one that can hardly get up, the one with the cramps, the one that sees other kids run and do, and he wants to be there.
“I’m his voice, his mind, his research. MD is a terrible disease, but I count my blessings. It could be a lot worse.
“How lucky am I that I have Nick for maybe 30 years? How lucky am I?”