Legacy of hope: One family's heartache leads to hope for others

Legacy of hope: One family's heartache leads to hope for others
Brady Cunningham (Source: Jessy Gale)
Brady Cunningham (Source: Jessy Gale)

Ballwin, MO (KAIT) - If you ran into 15-month-old Ezra Blackwell in public, you would probably just think he is like any other baby. These days he's mastering the army crawl and loves to laugh.

However, he has been through more in his short life than many of us ever will.

"He seems like a normal happy baby to us, that's what we're thankful for," said Ezra's dad, Ryan Blackwell.

Part of Ezra's story begins nearly 10 years ago in Campbell, Missouri.

That's where we met, baby Brady Cunningham.

Brady was suffering from a rare disease called Krabbe.

"What it does is eat away at the nervous system," said Jessy Gale, Brady's mother. "He was developing perfectly fine. Then slowly he's developed almost back to a newborn state."

That's what Brady's mother told us back in 2009.

She was on a mission with her then-husband, Dustin, to spare other children and their parents the pain they've experienced.

"We would have had a chance for a normal life," said Dustin Cunningham, Brady's dad. "We think that's why Brady was given to us for the bigger reason and we honestly think it's to save more children's lives in the future."

Brady passed away in 2009 just days before his first birthday.

His parents and grandmother, Jessy's Mom, immediately went to work with area lawmakers on getting legislation passed to make sure Krabbe Disease was a part of newborn screening tests in Missouri.

Shortly after a baby's birth, their blood is drawn and they are screened for dozens of diseases.

In Missouri, babies are now screened for more than 70 disorders.

When Brady was born, Krabbe Disease was not part of that screening.

Research shows that early detection is crucial in order for children to receive potentially lifesaving treatment.

Brady was four-months-old when his parents learned he had the disease. and by the time the symptoms started showing, it was already too late.

"I think that was the most frustrating part is if they had the newborn screening in place it could have saved Brady's life," said Becky Ruth, Brady's grandmother. "But, we weren't giving that chance, the chance of hope for a future."

Today, thanks to Brady and his family, that screening is possible.

Without it, baby Ezra Blackwell may not be here today.

Ezra was born in October of 2016 to Ryan and Karlita Blackwell.

"Everything seemed completely normal," said Karlita Blackwell.

The first time parents didn't really know what to expect, but to them, Ezra was perfect.

A couple weeks after his birth, Karlita got a call from a geneticist saying the newborn testing revealed Ezra had Krabbe Disease.

She had no idea what it was but could sense it wasn't good.

"Immediately after getting off the phone I googled what it was and was horrified," said Karlita.

She learned this disease could end her child's life.

In a matter of days, the Blackwell's headed to Durham, North Carolina to prepare Ezra for a stem cell transplant at Duke.

"Before the transplant, he had to go through 9-days of chemotherapy and that was the worst part," said Karlita.

Ezra spent several months in the hospital.

He is back home now.

And while thriving, he is still fighting.

He takes multiple medications a day and also continues to be under the close care of doctors and therapists.

"We take it day by day and are thankful for all the milestones that he's hitting now and soaking up what we have with him," said Karlita Blackwell.

We don't know for sure how Ezra would be today without the efforts of Brady's parents, but Ezra's parents truly believe the newborn screening saved his life.

Recently, through social media, the Blackwell's and Jessy Gale, Brady's mom, started forming a relationship.

Karlita suggested that they meet, and Jessy was thrilled.

One Sunday afternoon, Jessy drove to the Blackwell's home.

She was filled with emotions. Grief, joy, nervousness, excitement, the roller coaster was almost overwhelming.

She knocked on the door and instantly embraced Ryan Blackwell as he answered the door.

She made it up the stairs and tears quickly filled her eyes as she saw Karlita holding baby Ezra.

"It makes the grieving process for me, I mean 10-years later I'm still grieving, a little easier knowing he (Brady) was here for a reason," said Jessy Gale.

"There are no words that we can say, they gave us our child," said Karlita Blackwell.

Jessy and her mother, Becky Ruth, spent the afternoon holding Ezra and just marveling at how well he is doing.

"To see him smiling and laughing and throwing the ball, to see a big difference from what Brady had to go through to see what he's able to do," said Jessy Gale.

"While Brady couldn't be here with us today, there are so many other children who can," said Becky Ruth.

Ruth is now a Missouri State Representative, serving the 114th district in Jefferson County.

Her work with area lawmakers years ago on Brady's Law helped launch her own political career.

She said she saw politics as a way to get involved and make positive change, like what she saw happen with the newborn screening.

The Krabbe diagnosis was hard for the Blackwell's to take, but they are hopeful.

"He's (Ezra) the strongest little person I know," said Karlita Blackwell. "His attitude, he's happy, he's silly, he's active."

Because of Brady Cunningham, Ezra's parents feel like their son has a fighting chance.

"And being here makes me feel like this was all worth it...everything...every night I stayed awake all worth it just to see Ezra," said Jessy Gale.

According to Hunter's Hope, Missouri is one of six states to include Krabbe in newborn screening.

Illinois, Kentucky, Tennessee, Ohio and New York have also passed similar legislation.

The Hunter's Hope Foundation is a non-profit organization committed to giving hope through education and awareness, research, and family care for Krabbe, leukodystrophies, and newborn screening

Click here to find out more about Krabbe and current research and efforts.

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