Michael Stone likes to go fast. He especially enjoys barreling down the trails in the woods by his house. The hills are best: up one side, down another. At 18, Michael weighs just under 100 pounds. His dad, Matthew, pushes his wheelchair from behind.
Matthew has a long list of names for his son: Mikey, Mr. Stone, Big Mike. He loves to make Big Mike smile. When Matthew throttles the gas pedal in the family van, Michael lifts his head and grins.
One day, Matthew took the tires off one of his son’s old wheelchairs and replaced them with fat bike tires. With 4-inch-wide belts of knobby rubber beneath him, Big Mike can take on ambitious trails. When Matthew wants to give his son a surprise thrill, the two of them detour off the sidewalk to bounce across the soccer field with the tricked-out wheelchair.
Spastic quadriplegia is a severe form of cerebral palsy. That’s what prevents Michael from speaking. Instead of saying, “Hey dad, push faster!” he just allows a smile to grow bigger and bigger until it consumes his face.
And he has similar strategies for registering unhappiness. “Michael has a lot of facial expressions,” says Matthew. “And he doesn’t hide them like a normal person might!”
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After feeding, when Michael frowns, Matthew knows there’s a digestion problem. Michael suffers from gastroesophageal reflux disease, or GERD, so when his reflux flares, it can be uncomfortable. He furrows his brow, groans, spits up.
He seems to be asking, Isn’t there something else for me to eat?
The Longest Food Fight
Diet has always been a challenge for Michael. When he was 6, Matthew and wife Sarah found out that their boy was allergic to dairy. When Michael was in his mid-teens, he began to aspirate food, breathing it into his lungs.
The doctors put in a gastrostomy tube, or G-tube, to bypasses Michael’s mouth and throat and deposit food directly into the stomach. The Stones found a non-dairy formula, and for a couple years, that was Michael’s diet.
One day Big Mike’s standard formula shipment arrived, and Matthew noticed that it suddenly had dairy in it. “It turns out they had stopped making the non-dairy formula,” he says. “And instead they just sent us a formula with dairy.”
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After a follow-up allergy test, a doctor explained that Michael had outgrown his dairy allergy. It seemed odd, but who’s going to argue with good fortune? So Matthew began feeding Michael the dairy formula again.
It went okay for a few months, but Michael soon took a turn. “He was having heavy reflux,” says Matthew. In 2017, Michael aspirated the formula and got pneumonia.
The Stones began hunting for a new non-dairy formula, but it was a tough search. They found one, but Michael didn’t like it. Then they found another, but it was even worse.
Out of frustration, Matthew began scrutinizing formula labels. “It’s a lot of soy and a lot of nutrition that comes from man-made chemicals,” he says. “You read it and you’re just scratching your head going, What is all this stuff?”
The Junk Purge
Fortunately, Matthew didn’t have to settle for the least bizarre ingredient list, because he found Kate Farms instead. He read the label, and everything made sense.
When he fed it to Michael, the results were immediate. After a week on the Standard Formula, Michael was frowning less. His reflux was easing, and he seemed comfortable.
The victory here isn’t limited to feeding time. Smooth digestion means that Big Mike can spend more time plowing through woods and cutting across fields, beaming with joy while his dad trails him on foot.
“The faster I can push his wheelchair, the happier he is,” says Matthew, laughing. “You could say he has a need for speed.”
With his G-tube and reliable formula, Michael now has “the freedom to roam this great Earth with ease,” says Matthew. As a family, they can take picnics and road trips. Sometimes they eat in the car, if they need to. And when they visit national parks, Matthew looks to Michael to experience joy through his son’s eyes.
“He makes eye contact and smiles and laughs,” says Matthew. “It’s an amazing feeling.”
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