Celebrating similarities: St. Paul Park family embraces life with daughter with Pfeiffer syndrome
Five-year-old Kathryn McAllister likes to swing on her playset. She also likes playing with her older brother, Leland. She likes monster trucks, alligators, coloring, singing and stickers. And she especially likes Disney’s newest animated blockbuster, “Frozen.” In many ways, Kate is just like kids her age, except for one thing.
“Her face looks different from other kids,” Kate’s mother, Stacy, said. “Other than that, she’s a regular 5-year-old.”
Kathryn, who often goes by Kate the Great, was born with Pfeiffer syndrome, a rare genetic condition that occurs when skull bones prematurely fuse causing bulging, wide-set eyes, an underdeveloped jaw and a high forehead.
But rather than focus on the one difference, the St. Paul Park family is embracing the similarities as they prepare to send Kate off to kindergarten at Pullman Elementary. Each year, Stacy puts together an updated package for Kate’s teachers and classmates, which includes the top five most common questions, a current photo and information about Kate’s condition.
“The more people know about her, the more they are educated on her condition, the more they will be accepting,” Stacy said. “We know kids can be cruel. So if we start educating them now, hopefully by the time she hits middle and high school she’ll have a solid group of friends that will look out for her.”
Pfeiffer syndrome is a condition that affects about 1 in 100,000 births, but because Kate’s is Type II, hers is more severe — about 1 in 200,000 births. Five days after she was born, doctors placed a tracheostomy tube in Kate’s neck to assist her breathing. At just 28 days old, she had surgery on her abdomen to fix malrotated intestines and place a feeding tube. And when she was just 3 months old, Kate had her first reconstructive surgery on her skull in Dallas, Texas.
“Children with Type II are born with what is called a clover leaf skull,” Stacy explained. “So they have these bony protrusions on either side of their heads and their foreheads are tall."
Since birth, Kate has undergone a total of five reconstructive surgeries — two of which were major brain surgeries — and 20 surgeries altogether, including two back-to-back procedures to revise shunts in January. Stacy said Kate has been under anesthesia 67 times in her short five years.
“She has, at this point, no residual brain damage,” Stacy said. “She is, in every respect, a normal 5-year-old, other than the fact that she has a trach and she’s hearing impaired.”
The unique skull features that accompany the syndrome have given the family pause to reflect on negative experiences and turn them into life lessons.
“It’s hard, and it’s frustrating,” Kate’s father, Alan, said. “She hasn’t come home crying yet, but that first day, that will break my heart.”
“There are times when we’re out in the grocery store or wherever and children and adults stare,” Stacy said. “We get what we call the whiplash effect. And we’ve overheard some incredibly cruel things people say when they see Kate.”
The family has created business cards that have bits of information about Pfeiffer syndrome and take every opportunity to educate the public.
“I want Kate to follow my lead,” Stacy said. “So when she sees me not reacting or taking it as a chance to educate someone, she’ll learn to react that way too. Instead of focusing on what’s different about Kate, I’ll say, ‘You’re wearing pink and so is Kate.’ We focus on what she has in common.”
And it’s her common interests that have landed her more than 2,000 ‘Likes’ on her official Kate the Great Facebook page. The family said people from around the country follow Kate’s journey with Pfeiffer syndrome and pass along daily words of encouragement. For her birthday earlier this month, the McAllisters’ home was flooded with gifts from the many followers, friends and medical teams across the country.
“I had to set up a P.O. box, that’s how much stuff was coming in,” Stacy said. “Despite the challenges, we have been blessed.”
Her very own 'Bob the Builder’
While the family focuses on the upcoming school year and Kate’s extracurricular activities, there is one thing that hinders her ability to be a kid at home.
“Her room is tiny,” Stacy said. “With all the medical equipment, on-site nursing and charting areas and her stuff, her room is full.”
Knowing that Kate could use a space of her very own, Children’s Hospital in St. Paul contacted Special Spaces Minneapolis, an affiliate of a national company that builds dream bedrooms for children with life-threatening illnesses.
Following Kate’s most recent surgery this year, her nursing staff broke the news to the family that Kate had been chosen to receive a dream room makeover.
“Initially it was sort of one of those, ‘Do we really have the time, room and energy for this?’ kind of thing,” she said. “And we were afraid that we were going to have to do the footwork.”
Fortunately for the McAllisters, all the work will be completed by Bob Michels Construction. Michels and his daughter, Caitlin, are leading the design team. The construction firm has partnered with the BATC Foundation to make the dream room a reality.
“Kate gets her very own Bob the Builder,” Stacy said. “And we couldn’t be more excited.”
The only tough part, Alan said, is choosing a theme. Kate hasn’t divulged to her parents what the concept of her room will be but the family is guessing a mixture of alligators, monster trucks and princesses. A few must-haves the family has requested include a new ceiling fan with better lighting to keep her room cool, a new window to fix the draft and a new bed.
“She’s deaf so we would really like a visual fire alarm,” Stacy said. “Right now she sleeps in our room because if she needs help in the middle of the night we can’t visualize her in her room. So we want some sort of monitor in her room.”
Crews will begin the eight-hour process on Aug. 15, with a grand reveal later that evening.
“It will all be her room. We’re excited to transition her to her own bedroom and have the tools we need to be able to take care of her in her own bedroom,” Stacy said. “It will be nice for her to have a space that’s just hers.”
When asked if Kate was excited about starting kindergarten in the fall, she nodded her head and excitedly said that she was. The McAllisters said they are looking forward to getting her involved in more activities as the school year begins, especially dance.
“She did baseball this last year, which she really liked, and she’s hoping to take dance class this fall and she’s looking forward to just being a kid,” Stacy said. “She is a trooper and she just keeps on trucking. We just go along for the ride.”
For more information about Kate, visit her Facebook page https://www.facebook.com/pages/Kate-the-Great-Friends-and-Family/240225702681064.