- Disease

Saquon Barkley keeps promise to raise awareness for niece’s disease – 69News WFMZ-TV

Before Saquon Barkley became an NFL player, he made a promise to raise awareness for a disorder affecting one of his family members once he turned pro.

As a rookie, Saquon Barkley established himself as one of the league’s best players. Now, the Whitehall grad is hoping his on-field success translates into attention for a cause that hits close to home.

It’s early January and Saquon Barkley is back home in Whitehall spending time with his family. Perhaps the most excited to see the NFL star, outside of his daughter Jada, is his 9-year-old niece Amirah Johnson, or Mi Mi.

The trio starts dancing. Saquon is holding Jada’s arms up as she learns what’s become a family tradition.

“Every time he’s home, they dance and they play and she loves him,” says Amirah’s mom Katrina Krasenics.

“Her energy is so positive and when she’s in the room she just lights up the room,” says Barkley.

Although Amirah’s light is something Katrina says almost did not shine after she was born.

“The first day she was ok. Everything was going good,” said Katrina. “The second day, I was feeding her and she turned blue.”

Amirah spent the next five days in the NICU.

“Seeing her in the ICU in that little bed thing was difficult,” says Rashard Johnson, Amirah’s father.

Amirah would pull through and Katrina and Rashard took their daughter home. Yet without any diagnosis, Amirah continued to have issues.

“The left side was the biggest thing. Around six months, we noticed she wasn’t really using her left hand,” says Katrina. “They just said like her brain didn’t develop properly.”

Amirah started physical therapy when she was six months old and would have rods placed in her spine when she was three years old because doctors said it was curved. Amirah also began speech therapy but was not making much progress.

“Just working with her for a little bit I’m like just something isn’t clicking,” says Nadyne Dias, a speech language pathologist at Health & Wellness Center at Cedar Crest.

It was not until two years later when she was given a diagnosis: 22Q11 Deletion Syndrome.

“22Q” for short, the disorder stems from a person missing parts of their 22nd chromosome.

After learning there was not a cure but knowing he was destined for the NFL, uncle Saquon made a promise. He got the chance to follow through with it earlier this year with the NFL’s initiative, “My Cause My Cleats.”

Barkley went on “GMA Day” in November to explain his intentions saying, “I wanna raise awareness. You know 22Q is a rare genetic disease but it’s not very common to the general public and it’s something that I’ve been talking about with my brother when I was in college that when an opportunity comes that I wanna help and I’m gonna give her those cleats and I’m gonna take my own money and donate to a charity.”

The New York Giants running back ultimately gave the cleats to his niece following a home game the Giants played against the Chicago Bears.

The two met outside the Giants locker room and took a picture together with the cleats. It was the first time Amirah had seen an NFL game and she loved every minute of it. It was certainly a welcomed distraction from the daily concerns her family has with 22Q.

The disorder Amirah is living with forces her to be monitored by a team of doctors at Children’s Hospital of Philadelphia’s 22Q and You Center. Katrina says every year before school she tries to get Amirah through as many appointments as possible.

During the school year, Amirah also works with a physical therapist, Sarah Smith and Dias at Cedar Crest. Both say Johnson has made tremendous strides.

“We’re really just basing it on what we hope to see her get to and what she wants to get to,” says Smith.

“She’s been coming here for so long you would think that progress wouldn’t continue. She keeps getting better and better,” says Dias.

As for Saquon, through his own rising stardom, he can keep Amirah’s light shining with 22Q alongside her in the spotlight.

“That’s what everything’s about with sports,” says Barkley.

You can help Amirah and kids like her by donating at 22q.org and/or by showing up to the Chick-Fil-A in Whitehall on Feb. 2. Fifteen percent of the day’s sales will be given to The International 22Q Foundation.