Boy overcomes grim prediction about illness
Flushing — Ben Grindle is your typical 5-year-old in many ways. He likes watching videos on his iPad, playing with his older sister, reading and coloring.
His eyes light up when he’s happy and his voice will tell you when he’s upset or frustrated.
But one thing makes him very different from the other kids in his kindergarten class.
Ben was diagnosed with spinal muscular atrophy just eight weeks after he was born. He attends class in a wheelchair and is unable to move most of his body. He needs assistance to breathe with the help of a machine and eats with the help of a feeding tube.
But the debilitating illness that Ben’s parents initially thought would be a death sentence for their son has since become only an obstacle for them to overcome.
And life for the Grindle family is moving forward.
“He’s always had a personality. He was always very vocal, communicates with eyes, very expressive,” said Ben’s mother, TJ Grindle, adding that his cognitive abilities are the same as other 5 year olds. “We want him to experience as much as he can.”
When Ben was first diagnosed, his family was told he would only live to be 2. This year, at almost 6, Ben is enrolled in kindergarten and is continuing to learn and grow.
SMA is an inherited disease that causes muscle loss and loss of motor functioning. Ben has Type 1 SMA, the most severe form.
Both of Ben’s parents carry the SMA gene, which gives them a 25 percent chance of having a child with the condition.
Ben and his family were first featured in the Flint Journal in August 2011 when his parents — TJ and Jason Grindle — were celebrating every half birthday because doctors gave Ben such a grim prognosis.
But Ben and his family knew his potential was more than that.
TJ, a teacher in the Clio School District, and Jason, a financial adviser, did their research. They began raising money for research and contacting other SMA families on social media pages.
They saw hope, and they saw strength in their son.
The family remodeled their Flushing house to accommodate Ben’s needs. They made the decision for Ben to undergo a tracheostomy — a surgical procedure that creates an opening in the neck to the windpipe — to help him breathe easier. His parents fought to have insurance approve an electronic chair that Ben could control with his thumbs, even though some doctors thought Ben would never function well enough to use it.
Ben is only at the Flushing Early Childhood Center for kindergarten two days a week, but he is still part of the class and does the same activities — even if it takes a few extra hands and a little more attention.
He has a nurse with him 20 hours out of the day. He has an aid with him at school to help with assignments and activities. But he still joins the other kids on the carpet for games and reading time.
Jason and TJ Grindle have chosen to not let Ben’s diagnosis stop him from being a kid and living life to the fullest.
For the first few weeks of Ben’s life, his parents didn’t know anything was wrong. The only thing they noticed was he was sleeping a lot.
At his 6-week check-up, the doctors noticed he had no reflexes, and they made an appointment to see a neurologist. Originally told they would have to wait two months, he was soon bumped to the top of the list.
That’s when Jason and TJ knew something was wrong.
Next came a whirlwind of doctor appointments, machines to help him breathe and eat, and a different way of thinking. How they thought their life would be was about to change drastically.
“It was very overwhelming,” TJ said, adding that she took 1 1 / 2years off from teaching to take care of Ben. “It was just too much.”
Boxes of medical equipment filled one room of their home. The basement looks like an actual hospital because of all the medical supplies, Jason said.
Ben’s room, which is the remodeled dining room, has an electronic track that allows him to be easily moved to a tub inside his room. There’s counter space, a sink and cupboards to hold his supplies.
He has medical equipment next to his bed for whatever he needs — along with piles of toys and a TV to watch movies.
SMA affects all major muscle groups in the body, including the lungs. In Ben’s case, he can’t swallow, breathe or move most of his muscles on his own.
He was wearing a mask 24 hours a day to help him breathe until July 2012, when his parents made the decision for Ben to have the tracheostomy procedure to give him more comfort throughout the day.
Jason and TJ still have scary moments, though, especially when his airway gets clogged. It can happen anywhere, and has — including in the middle of Toys R Us and the back of their van while driving. And his parents need to be quick to switch the tube out.
Ben has grown up a lot since that first diagnosis. He can move his thumbs, communicate with his eyes and get short words and sounds out when he needs to.
Although it was all chaotic at first, after a while, life seemed to calm down for the Grindles.
TJ went back to teaching. The family continued to go on vacations. Lily, Ben’s older sister, goes to school and after-school activities. Life became life again.
“Our mindset is totally different now. At the beginning we were like we have to do so much and make so many memories,” Jason said. “After a while, you have to get past that and realize you have to live a normal life. We live a more normal life with two kids and two careers.”
When asked to describe their everyday experiences, TJ and Jason both laughed, but a few terms came to mind quickly — controlled chaos, fast and furious and very structured.
When asked about their life, TJ admits it’s nothing like they thought it would be.
But life for their family is still amazing, she said. They’ve been able to do some amazing things that probably would have never happened otherwise.
Jason said some people show pity or sympathy for the family because of Ben’s SMA. But that’s not what they want.
“Don’t feel sorry for us. We live a pretty awesome life,” Jason said.
The family has connected with families and kids across the country that have SMA or have a loved one with SMA.
The experience and knowledge has been extremely helpful for the Grindles. But it’s more than that. They have gained friends and hope along the way.
Every summer about 20 families meet in Lancaster, Wisconsin, to take part in a huge event with fundraisers, support and more information.
They also have met a teenager, Cashel Gardner, whose SMA is similar to Ben’s. Using only his thumbs, he can type his thoughts to a computer that reads them aloud. He has become somewhat of a public figure in the SMA community with his Facebook blog, “SMA it Forward with Cashel.”
Jason recently flew out to Las Vegas to help celebrate Cashel’s 18th birthday.
“It was cool just to meet him. … It’s awesome (to see Cashel succeed). You’re visualizing the potential (for Ben). The potential is not just one year, two years out,” Jason said.
Ben’s daily life is different than other kids his age, but that doesn’t mean he should be treated any differently, his dad said.
“Cognitively, he’s 100 percent a 5-and-a-half-year-old. He gets frustrated. He can’t talk. You’re playing 100 guesses of what he wants,” Jason Grindle said. “You can see frustration on him. He would love to be able to say, ‘This is what I want.’”
He loves movies, books and going to school. He really enjoys being around people, but that’s hard sometimes, Jason said, because people don’t really know what they should or shouldn’t do.
But really it’s simple.
“They see him still like a baby because he’s in a wheelchair stroller type thing,” Jason said. “Don’t baby talk him. Treat him like a normal kid.”
Information from: The Flint Journal, http://www.mlive.com/flint
An AP Member Exchange shared by The Flint Journal