Every day is Owen’s Day: Family of 8-year-old boy diagnosed with a terminal disease celebrates life

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It was Owen’s Day at Apollo Elementary School in Aledo.

The school is rallying behind an eight-year-old boy in one of the classrooms.

Owen Groesch‘s classmates and teachers are placing a particular focus on him Wednesday to bring attention to a terminal diagnosis.

His family learned in May 2018 Owen suffers from MPS.

This final diagnosis has been a long time coming. Owen’s family spent six years visiting doctors and running tests.

“He was showing a lot of autism characteristics. He would flap his arms, and he would line up his toys, and there’s some other things as well, so we were kind of going that route but when we got the testing done and they said he didn’t have autism cause he could still communicate,” said Owen’s mom Shelby Lyon. 

Shelby said she started noticing the signs when he was about 18 months old when he stopped talking for roughly 9 months.

It was a genetic test that gave them the answer, MPS. A disease Owen’s family said even doctors admit to them they know little about the condition.

Only about 1 in 70,000 children are born with the condition, making it extremely rare. 

MPS has no cure as of yet and no good prognosis.

On this National MPS Awareness Day, May 15, his community and school are going purple to continue on the support for Owen and his family.

Shelby said, “Owen doesn’t really get that it’s his day, but we call it Owen’s Day.”

Presents and cake but Owen Groesch’s birthday is still a month away.

Owen’s stepdad Randy Lyon said, “He likes to tell everybody it’s his birthday but I mean, with what we’ve got going on, it’s like it’s his birthday every day.”

Owen’s Day is about this happy-go-lucky eight-year-old.

Shelby said, “Owen is a very happy, caring kid.”
“Everybody wants to be around Owen,” added Randy.

But to also bring awareness to the wretched disease he faces.

Shelby said, “MPS is short for Mucopolysaccharidosis.”

That long word is why Owen’s Day is so important for his mom Shelby and step-dad Randy.

Shelby said, “We have to do whatever we can to make him as happy as he can be every day. Your heart just gets ripped apart, and you’re the whole world gets turned upside down.”

The type Owen has is called Sanfilippo Syndrome or MPS III.

It’s where enzymes needed to clear out dead cells are not produced, and eventually, that leads to brain damage. 

Shelby said, “End up in regression. He will stop walking and talking and eating and just slowly regress.”

It makes time the enemy.

Randy said, “You just don’t know when things are going to happen. You don’t know when he’s going to regress. Being terminal, we don’t know when that day is going to come.”

That’s why “one day at a time,” isn’t just their motto but how they live.

Randy said, “That’s all you can do.”

So while this is Owen’s story.

“With a diagnosis like this, I would’ve prayed to get this much sooner so we could just enjoy life and stay out of the hospital just trying to figure out what’s going on. So now that we have our answer, it’s definitely not the answer we wanted, but we can just enjoy life now and make Owen as happy as he can be in our every day,” said Shelby.

The hope is it will help other parents searching for a diagnosis.

Shelby said, “Notice any change in your child, just look into something just outside of the normal routine testing that they do.”

It’s giving more time to treasure the little things.

Shelby said, “Playing on his iPad, or playing with the little toys or George.”

And the big moments like support from an entire school because Owen’s Day is each and every day.

Shelby said, “If he thinks something is funny, we’re going to do it for 15 whole minutes just to hear him smile and laugh out loud.”

This will be Owen’s last year in the Mercer County School District. He is transferring to a school to meet his needs better. 

The family also said another significant support has been the National MPS Society. Just days after Owen’s diagnosis, they contacted the family and helped to provide them with resources and information.

Shelby is now a member of the Society’s board and will be heading out to Washington D.C. to advocate for MPS.

One of her hopes is to see testing for MPS part of early childhood screening.

They’re also looking to enroll Owen into an MPS clinical trial that is starting in hopes of finding a treatment.

To follow along with Owen’s story, the family has set up a Facebook Page and blog

They also have an online shop

A 5K is also being planned for 2020 the weekend after MPS Awareness Day in Milan.

The family recently learned Owen will be a Make-A-Wish recipient for a family vacation this fall.
 

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