The journey of Rebecca Veeck was like a shooting star in the sky. You love it. But come away wishing the experience lasted longer.
Perhaps those special encounters with such stars are designed to be brief. Or maybe the body of Rebecca Veeck simply could not manage carrying all the beauty and love she created.
It is likely we may never know the “why?” But we certainly know the “what.” This girl, this young lady, undoubtedly made the world a better place.
On September 30, 2019, Rebecca Matthews Veeck passed away ending her battle with Batten Disease. She was 27.
By the end, her cause of death was her debilitating way of life. The fatal neurodegenerative disease attacking her nervous system. Mercilessly, it brought on symptoms of dementia, ALS, and blindness. Dedicated research scientists at the University of Iowa are hoping to benefit others by studying how she died.
Our duty here is different. It is telling you how Rebecca Veeck lived. And if we do it well enough, hopefully you will get a sense of something special. It happened with many of the people she met.
Never in doubt was her DNA. A Fun, outgoing chip off the ol’ block. She was as close as could be to her Mom and Dad. And boy did she ever look up to her caring, Big Brother, Night Train Veeck.
Graciously from birth, the family shared Rebecca with others. Besides, “Little Miss Friendly” would have it no other way.
The Home Run Daughter
Dad called her, “Rebecky.” If you ever heard him saying it to her and her responding, you’d guess it was part a secret love language only the two of them knew. The same was true every time Rebecca would call out, “Mom! Mom! Mom!”
She was part of the third consecutive generation of Veecks to grow up at the ballpark. By age 2, the brilliant ray of sunshine was your first and lasting impression visiting the St. Paul Saints offices. In her playpen by the door, one big “Hi” from her little mouth would visibly brighten people’s day.
And oh, she could be engaging, even mesmerizing. Rebecca knew her powers all right. She loved using her comedic timing for getting laughs. This was even true when she was part of the joke. For instance, wearing matching little tutus on the field with the St. Paul Saints’ ball pig.
Later, Rebecca worked the Charleston RiverDogs Kid’s Zone. However, she might have been even more valued by adults at the Guest Services booth. Most everywhere she went, love, laughter, and smiles went along.
Discovering she would go blind was no joke.
During a first-grade eye exam, life for and with Rebecca basically turned upside down. Once she reached the middle of reading the chart, her eyes forced her to say, “I can’t.”
Naturally, Mom Libby, thought she was kidding and told her to be serious. Unfortunately, she was. Rebecca Veeck was diagnosed with retinitis pigmentosa. A genetic disease destroying cells in the retina. It takes away night vision, then peripheral vision. Finally, central vision. The lucky ones keep a small degree of sight.
After being told her eyes were failing, Rebecca still had keen vision. She said, “I’ll be fine. I’m a Veeck.”
Hall of Fame Grandfather
Bill Veeck was Rebecca’s grandfather. Her brother William “Night Train” Veeck was named after him. And one can easily pick up his resemblances to Bill. Comparatively, Rebecca too had hers.
Sadly, Rebecca’s grandfather died nearly 5 years before her birth. Oh, what Fun they would have been. Whatever your thinking is on reincarnation, the similarities between Bill and Rebecca Veeck can make you wonder.
Both were left-handed. That alone is a 1 in 10 longshot.
Both had blonde hair and blue eyes in a mostly brown-haired family. Hmmm…
A similar laugh and sense of humor, along with the ongoing curiosity of a child.
Each had serious physical disabilities they primarily managed in much the same way. Putting others at ease.
Two Veecks.. two generations apart had even more in common. Unfortunately, as Rebecca’s could Dad uniquely attest, she too had more than her fair share of adversity.
“She deals with difficulty so well,” said Mike Veeck. “Just like my father. I thought I was going to teach her. Instead, I would hold her hand hoping it rubs off.”
How Libby and Mike Veeck Treated Their Daughter and Her Disease.
Like other parents facing long-term challenges, they did the best they could with the tools they had. If you asked Rebecca, that meant giving her love and respect.
She loved being allowed “a voice.” More of Rebecca’s vision explains: “My parents help me so much by not pushing me into talking about it,” said Rebecca as a child.
“If they want to talk about my eyes, they always ask permission. And I think that is very important. Sometimes they think they are not good parents, but I know I am lucky to have them.”
She sometimes liked the nickname, “Becca Cat.” After all, she named two cats sharing the influence of her parents. “Dylan” and “Elvis.”
After she finished 2nd grade, the Veeck family ran a loving race against time.
They planned on taking a year showing Rebecca the world while she could still see it. For a girl who loved magic, they made magical memories. Hitting 32 states. All U.S. National Parks. Visiting other countries. Creating and enjoying life, especially in the moment.
Somehow, ending the trip early was as beautiful as why it began. Libby Veeck saw her daughter’s truth. “We realized she is just a little girl who wants to be with her classmates, too,” she said. “She needs that socialization and support we can’t provide as parents.”
Rebecca had passions, many in fact. She loved movies and music, playing the piano and taking lessons. She enjoyed making art from ceramics and pottery to painting.
And like her great-grandfather, William Veeck, Sr., her grandfather, and dear ol’ Dad who wrote professionally, Rebecca had a talent for writing.
Horses also felt a connection with her as she did with them. She said riding horses gave her a sense of freedom. She regularly took lessons for both Fun and improvement.
Rebecca also had a fondness for mermaids and Greek mythology. Because of these interests and others, it was commonly believed she was wise beyond her years.
Rebecca Veeck Loved Baseball.
The whole family loved baseball deeply, partly because of the Fun they had. Working at ballparks Rebecca took pride in blatantly violating child labor laws. A favorite of hers was devilishly mentioning this during media interviews. Credit on the job training from her Dad and grandfather about testing the elasticity of rules.
Anyway, after that milestone eye exam and throughout her life, there was one act Rebecca Veeck routinely performed. If you knew to look for it, you could see her downplaying her vision challenges. She did this out of love as much as denial of her blindness.
Rebecca claimed it was her way of trying to prevent her parents from constantly worrying about every step she took. (Both literally and figuratively).
Regarding others, she also believed it helped people feel comfortable with her instead of feeling weird.
Unlike Rebecca Veeck's Vision. NO ONE Questioned Her Hearing
Consistently and comically, loved ones praised her extraordinary hearing skills. Perhaps it was due to her compensating for blindness.
Regardless, Rebecca commonly savored shouting to let you know her ears were working. Honestly, it was like the girl could hear a whisper on an active construction site a country mile away.
Yet an even more valuable gift was Rebecca listening with her heart.
One example is the night at a restaurant having dinner with her parents and family friend, M.C. Antil. Young Rebecca asked to be excused from the table. Surprisingly, she didn’t go to the ladies’ room. Instead, she went to visit an old man dining alone. Based on seat location, M.C. saw it first and began crying. Libby and Mike turned and joined in. Soon, the man being blessed by Rebecca talking with him also had tears flowing. It was all because of her old soul kindness.
20 minutes later, Rebecca nonchalantly returned to her table. She simply said, “I could tell the man was lonely and thought he would enjoy some company.”
Notice she didn’t say she could “see” he was lonely. Chances are she couldn’t. But her heart could.
How Rebecca Veeck Lived. She was not her Disease or Diagnosis.
Following her teenage trials and tribulations, Rebecca began having strange moments. Thoughts and words were escaping her. This was glaring considering she could talk with anyone about anything, at any time.
When her seizures began at age 22, the Veeck family needed answers. They were eventually led to specialists at the University of Iowa.
The shocking news hit like a baseball bat upside the head. And that is not exaggerating. They were now facing an inherited retinal degenerative disease. But not the one she seemingly already had.
Rebecca Veeck had an unusually late diagnosis of Batten Disease.
The Batten Disease moment was devastating for all the reasons you can imagine. Plus, some others. Being told it was fatal and there is no cure was shocking beyond words. Discovering it was a rare disease they had never heard of only added to the disbelief.
It turns out Rebecca’s Batten Disease went undetected for years because she had no symptoms beyond blindness. And besides, no one was looking for them anyway.
Until the first Batten Disease seizure, retinitis pigmentosa had been her scary diagnosis. And that was plenty big and bad enough all by itself.
Finding a bright side to Batten Disease.
“That original misdiagnosis was actually a blessing for us,” Mike Veeck said. “For us not to have known all those years earlier that she was dying was a godsend.”
Despite Batten Disease relentlessly taking over Rebecca’s body, her slide was slower and softer than it could have been. Once again, love and respect from her parents made the best of an unbearable situation.
Dr. Kevin Harmon led Team Rebecca. It was a loving group of Superheroes in Charleston, South Carolina. Their daily overcoming broken hearts helped in caring for Rebecca’s medical needs, her comfort, and her dignity.
Until the moment she passed away, Rebecca could still find ways of consoling loved ones.
Occasionally but unexplainably, she could somehow tap into sharing wonderful memories. Even creating new ones, too. You could see her essence was in there right up to the bitter end.
As fate would have it, Rebecca Veeck’s last words were Fun.
“Paging Dr. Kevin!”
You can’t get any more Veeck-like than that.
Today, the legacy of Rebecca Veeck lives on. Rightfully so, she will forever be remembered as Fun and Good, and all there is of both.