Nine-year-old boy drafted by CWU baseball team, shares about life with McCune-Albright syndrome

ELLENSBURG, Wash. — Jack Keeling is a pretty big deal for a nine-year-old: he’s well-traveled, he has a dedicated Facebook page and he’s the youngest player ever drafted by the Central Washington University men’s baseball team.

Swarmed by fans, family members and reporters at a Wednesday press conference, Jack signed a National Letter of Intent and officially became a college athlete — all before graduating from elementary school.

“We’re extremely fortunate to have him on the team with us,” player Jaden Hassell said.

Answering questions and laughing at his sister making funny faces, Jack said he’s happy and ready to have fun; he’s been waiting a long time for this moment.

“He’s gone through so much,” Jack’s mother Megan Keeling said. “It’s not gone easy. He’s had a couple of really bad experiences.”

His journey began about six years ago, when a routine appointment led to a doctor asking for an x-ray. Later, Megan got a call no mother wants to receive.

The doctor told Megan that Jack had a lesion on his femur and told her the radiologist thought it might be cancer.

“This is just the beginning. Things will get worse before they get better,” Megan wrote in a 2016 letter to her past self, the ‘Meg’ before her son was diagnosed.

In a couple weeks, Megan found out it wasn’t cancer, which began her son’s journey with with McCune-Albright syndrome (MAS) and fibrous dysplasia (FD).

“It’s a rare disease,” Jack said. “It’s when there’s lesions in your bones and your bones are really soft.”

That means his bones break easily; Jack’s had seven surgeries for six fractures, including four on the same femur. Megan said his bones can be sore because they’re not as strong as normal bones.

Despite his circumstances, Jack is an energetic, matter-of-fact, determined little boy. His mom calls him a “little old man”, especially when he wears a robe to breakfast to drink a hot cup of decaf coffee.

“He’s got this cute little smirky smile that he does,” Megan said.

Jack thinks deeply and seriously before answering questions, pausing and looking up as if the answers are right above his head. His favorite class is math and he’s really good at it.

“He loves eating so if he’s ever in a bad mood, we just toss him whatever he wants to eat and then everything gets better,” Megan said, turning to look at her son beside her.

“Isn’t that right, Jack?” she said, earning one of his trademark smirky smiles, dimples and all.

Jack talks about the medical side of his life in a matter-of-fact way, listing fractures as if describing the color of his hair or how many siblings he has.

“I had four surgeries on my left femur right here; I had a surgery on my right arm,” Jack said, pointing to each one.

Megan says he actually enjoys going to the hospital. At a recent visit to a new neurosurgeon, Jack was listening as the surgeon explained a possible procedure, then paused.

“He was like, ‘Sorry, Jack, I know this is kind of a lot,” Megan said. “And [Jack’s] like, ‘Oh, it’s okay. I love surgery!”

Raising four kids — 13-year-old Ava, 11-year-old Beau, six-year-old Bailee and of course, Jack — is a balancing act, all of them with their own interests and activities.

Sometimes, the dishes don’t get done; when Megan talked about cooking, she and all the kids burst out laughing.

“I can make a sandwich just great, taco night is fine, but much more than that, we gotta go get take-out,” Megan joked. “But you can’t do everything, right?”

Megan has spent the past six years researching, searching for answers and advocating for her son, though she says Jack can take care of himself quite well.

In the beginning, Megan and the doctors would try to get Jack to move after his surgeries and he wouldn’t have it. He’d always do it in his own time.

Now, Megan just tells the doctors that while Jack’s not going to move for a few days, he will do it and he’ll do it when he’s ready.

“He really has learned to advocate for himself and know his limits,” Megan said. “And now I know to trust that.”

Jack even has his own Facebook page; with his mom’s help, they created “Jacky’s Journey,” where they post about his progress, his travels to different hospitals and a whole lot of photos of Jack drinking his decaf coffee, sometimes with a snack.

“He’s an impactful little guy,” Megan said.

There’s no cure for MAS or FD, but Megan’s hopeful. Jack’s taking part in a research study at the National Institutes of Health in Maryland.

Another spark of hope is the Fibrous Dysplasia Foundation, which helps people with MAS and FD by funding research, developing support networks, linking patients and doctors and by being advocates.

Every year, the foundation sends a team of bicyclists to the Million Dollar Bike Ride in Pennsylvania, a major fundraiser in support of rare disease research — they’ve raised about $300,000 for funding research grants to help kids like Jack.

“I try to keep a balance of protecting him and letting him have a normal life,” Megan said.

Jack can swim and play with his siblings, but for the longest time, he couldn’t be part of a sports team.

That changed when Jack became involved with Team IMPACT, a Boston-based, non-profit organization that connects children facing serious or chronic illnesses with college athletic teams.

“It’s a really fun sport. My favorite position is batter,” Jack said. “I’m gonna watch the games and go to the practices.”

Megan says she’s excited that Jack finally gets to have the feeling of being a part of a team, something he didn’t really have before.

“This will just hopefully give him that feeling, that every kid should be able to have,” Megan said.

Coach Desi Storey said Jack’s involvement with the team is just as important for the other players as it is for Jack.

“They get to see what some children go through, [something] that they never had to deal with,” Storey said.

Players met Jack last fall and right away, he became a part of the team. Storey said Wednesday’s ceremony just made it official.

“I definitely think it’s an opportunity we couldn’t pass up … Jack’s a great kid,” Hassell said. “It’s more of an honor for us.”

Storey said Jack will be continuing to come to practices and games, being as involved as he wants for as long as he wants.

“He’s always going to be part of the family,” Storey said.

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