Inlet teen uses Make-A-Wish to help others with epilepsy
Maria Lutz is getting her wish and paying it forward.
Lutz, a 17-year-old high school graduate from Inlet, is using her opportunity to have a Make-A-Wish wish granted to help others with epilepsy, like her, afford the seizure medication they need.
“I would rather give back than take,” Lutz said Thursday. “It was just something that would make me happy.”
A $10,000 fund administered by the Epilepsy Foundation of Northeastern New York has been set up in her name. The money will be used to help hundreds of people in the 22 counties the foundation covers.
“Epilepsy will affect one in 26 people in our lifetime, and currently affects more than 45,000 people in northeastern New York,” Epilepsy Foundation of Northeastern New York Executive Director Jeannine Garab said in a statement.
A life-changing day
Lutz was 12 years old when she experienced her first seizure — a sudden, uncontrollable loss of bodily and mental function.
“I’ll never forget the day that changed my life forever. I felt an extreme sense of emptiness,” she wrote in a column for Make-A-Wish. “From that day forward, I lost a sense of control that I am still working to regain. … This disorder does not define who I am, but it has shaped who I am.”
Lutz said she tried to ignore it at first. But the events became more serious.
“It’s been awful, as a mother,” said Maria’s mom, Yvonne “Bonnie” Lutz. “Not being able to help your child … you’re helpless. … Unfortunately, I’ve just been a bystander.”
With anti-epileptic medications, the severity Maria’s seizures are lessened, though they come with difficult side-effects, according to Maria.
“But any side effects are better than seizures,” she said.
Thursday was an exciting day for her family. They announced the launch of Maria’s fund at a press conference in Albany.
“We’ve been really looking forward to this day,” Bonnie said. “She can finally tell people. She’s been busting at the seams.”
Maria said she grew up with a friend in Inlet who also has epilepsy.
Choice took time
The Make-A-Wish foundation approached the Lutz family at a hospital in Boston and offered Maria a wish. She was left with a big question: what to wish for.
She spent years thinking about it, but none of the choices felt right, she said. She had a deadline, though. Her Make-A-Wish opportunity would expire when she turns 18 in a few months.
Then, one night, as she lay awake in bed, thinking, inspiration struck.
“I wish I could take away the pain of anyone who lives with this,” Maria wrote. “I can’t. But I can do something to help.”
It’s what she wanted most in the world.
Bonnie said she’s always been able to afford Maria’s medication — she has a good job with good insurance. Bonnie serves as Inlet’s town clerk, according to the town’s website.
The thought of not being able to afford the medication giving her a sense of control terrified Maria.
“The No. 1 reason for skipping doses is cost,” she wrote in her column.
A path less taken
There are five types of Make-A-Wish wishes — “I wish to have,” “I wish to go,” “I wish to meet,” “I wish to be” and “I wish to give back.” That last one, the rarest choice, is the kind of wish Maria chose.
Mark McGuire, the communications director for Make-A-Wish Northeast New York, said the last time this option was chosen in his branch of Make-A-Wish was in 2018.
He said it is “humbling” to see Maria make such a request. The children Make-A-Wish works with are going through so much in their lives, he said, but he was impressed that Maria was still thinking of others.
McGuire said her wish will have an impact for years.
“At Make-A-Wish, we often talk about the power of a wish — and no wish is more powerful than one that gives back in the service of others,” Northeast New York Make-A-Wish CEO William Trigg wrote in a statement.
Karen Wachs and Sandi Worona are the volunteer wish granters who made Maria’s request possible. Wachs is a member of the Epilepsy Foundation of Northeastern New York Board of Directors.
Bonnie said the fund will not stop at $10,000. Maria is planning on turning her goal of ensuring access to epilepsy medication into a lifelong fight.
More donations to Maria’s Epilepsy Medication Emergency Fund can be made at https://bit.ly/2V2q97V.
Maria said she’ll be able to learn who is getting medication thanks to her wish.
On the right path
In 2019, Maria’s life changed again, for the better. In an eight-hour surgery at the Mayo Clinic, Kai Miller, a surgeon, implanted a Responsive NeuroStimulator that counteracts abnormal brain waves through stimulation.
Maria is still fighting. She goes to the Mayo Clinic in Minnesota every three months for adjustments and still takes medication.
Bonnie hopes with enough adjustments, eventually, Maria will be completely done with seizures.
This spring, Maria graduated from the Town of Webb High School.
She will attend SUNY Oswego in the fall to major in journalism and minor in creative writing.