For half of her young life, Maura McGee has battled a disease that is practically impossible to pronounce, let alone comprehend.
Yet, the 7-year-old Baldwin Borough resident seems to take her diagnosis and treatments in stride.
“She has never cried, never pouted, never said, ‘Why me?’” said Jackie Connolly, her great-grandmother. “She just is an inspiration to the whole family. We look at her when we have problems and think, if Maura can get through this, we can.”
The disease Maura has been diagnosed with is Mucopolysaccharidosis Type I, which is also referred to as MPS 1.
“It is a disease where you’re missing a gene that creates an enzyme that breaks down sugars,” said Joe Stanick, Maura’s stepfather. “So you get buildups of sugars in different places in your body, because your body doesn’t function like a normal person’s does.”
On May 31, Maura underwent a bone marrow transplant as a corrective measure for the rare condition, and at some point in mid- to late June, her doctors at UPMC Children’s Hospital of Pittsburgh should know if the procedure proves to be effective.
In the meantime, she and her family have been receiving a tremendous amount of support, from the Baldwin-Whitehall community – she is a first-grader at W.R. Paynter Elementary School – to other parts of the South Hills and Washington County.
At the suggestion of member Greg Incardona, McMurray Rotary Club organized a June 3 event at Build-A-Bear Workshop in South Hills Village Mall to provide stuffed animals for Maura and other Children’s Hospital patients.
Several members of the Peters Township club, some accompanied by their kids, participated alongside members of Maura’s family in creating festive bears with distinctive clothing fashions and accessories. And many Rotarians who couldn’t make it contributed toward purchases, with the result of enough toys for all the youngsters on Maura’s floor plus a whole lot more.
“It makes me cry to see what everybody’s doing,” her grandmother Laura Howley said. “The people have just been overwhelmingly generous and supportive.”
Laura’s daughter is Brianna Stanick, Maura’s mother, who has been a fixture at the hospital since the start of pre-transplant chemotherapy treatments in the middle of May.
“She’s been home maybe four nights in the past three weeks,” Joe Stanick said, noting Maura’s father, Frank, also has been at Children’s practically every day.
Other family members are frequent visitors, and they tend to be impressed with their experiences at the hospital.
“We are very blessed and very thankful for everything they’ve done for us: The communication, the cleanliness, the staff making sure we’re OK,” Howley said. “The nurses are beyond helpful, attentive, very much attention to detail, kind, keeping her engaged, keeping her laughing. It’s amazing how they make you feel comfortable with your child being there.”
When Maura was diagnosed with MPS 1, her initial treatment was to have infusions of enzymes, a four-hour process one day a week.
“When she started to get them, she showed progress. Then after a while, the progress ceased. What happened was she started to create antibodies to fight the enzymes she was being infused with,” her stepfather said.
“That scenario, where you start with the infusions and the infusions don’t work, has only happened very few times,” Stanick said. “It’s very rare, so they didn’t have a lot of information on it.”
Her doctors should be able to determine whether the transplant is a success between 16 and 28 days after the procedure, meaning the earliest she would be able to return home is June 29. When she does, she’ll rejoin her four siblings.
Taking care of everyone in the household has been a challenge, and the family has received a great deal of assistance.
“Somebody did a meal train,” Stanick said. “People have been bringing food to our house. We haven’t had to cook a meal in a couple of weeks.”
That’s on top of fundraising efforts including the sale of “Maura Strong” T-shirts, which has generated more than $3,000, and of hats and headbands for Maura and other children losing their hair because of chemotherapy.
“What’s sad is to see all that she’s gone through,” said Karen Stanick, Joe’s mother. “All she’s known for the last four years is doctors and hospitals and needles, and it’s just hard to see. But she takes it like a trooper.”
And she’ll continue to do so, as her step-grandmother predicts:
“She’s strong. She’s feisty. And that, I think, is what’s going to get her through everything.”
To order “Maura Strong” shirts – “All proceeds to benefit our little but mighty warrior, Maura McGee” – visit www.bonfire.com/maurastrong.
Even though it was Monday morning, some special visitors to South Fayette High School had everyone smiling.
Rottweillers Josey and Jury, toy poodle Karma, Chihuahua Gigi and Obi Wan – he’s a big, cuddly cross between a golden retrieve and poodle – arrived at the school by invitation from a group of students taking Advanced Placement English.
“They had approached me with the idea of bringing in therapy dogs during the week of finals to help alleviate some stress and bring some positivity to our students,” co-principal Laura Hartzell said. “I’ve worked with the group of students to organize the signups and make sure that students have permission slips to be able to visit with the dogs.”
The AP group, which organized the activity as a class project, spread the word sufficiently so 87 students signed up for the opportunity.
“The project was supposed to be centered around solving some form of inequality in the school system, so a lot of students touched on issues regarding race or socioeconomic inequality,” senior Zora Mosley said. “But we wanted to talk about intellectual inequality and how stress, anxiety, different mental conditions like that can affect student learning.”
Because seniors already finished classes in anticipation of commencement June 7, Mosley was at the school Monday on a volunteer basis. The folks who brought the dogs, through Westmoreland County Obedience Training Club, also are volunteers.
The Delmont-based nonprofit’s Thera-Paws program helps brighten the days for people in hospitals, special-needs facilities, senior centers and other locations.
“A lot of the activities that we do are in schools,” said Hollee Russell, the volunteer who coordinated the South Fayette visit. “With some colleges, we do stress-buster events before finals, and in high schools they’re starting to do the same thing.”
The canine visitors serve other purposes, too.
“Younger students will read to the dogs. It helps relax them,” Russell said. “They can pet the dog as they read, and then it builds their confidence reading out loud.”
Participating Thera-Paws canines are registered with the Alliance of Therapy Dogs, a national organization that provides testing, certification, registration, support and insurance for members. The pooches come in all sizes and breeds, according to Russell, who owns the Rottweiler, Josey.
“It’s based on the temperament of the dog,” she said. “They have to be willing to be touched and petted. They have to be good around people who might shake a little bit, if they have a medical issue.”
She also is a team member for Crisis Response Canines, which provides dogs throughout the nation when needed.
“These dogs actually deploy. They came into Pittsburgh after the synagogue shooting. We have six team members in Virginia Beach right now,” Russell said about the Tree of Life Synagogue murders in October and the May 31 killing of 12.
In contrast, she noted, was the simple spreading of joy to start finals week at South Fayette.
“This is the positive side,” Russell said.
In her daily travels, McMurray Elementary School teacher Rebecca Fox-O’Kelly often passes 84 Lumber’s North Strabane Township headquarters and its display of as-seen-on-television tiny homes.
“I thought it would be great if we could get them to come here and represent their tiny homes, and also show the students what tiny-home living is about,” she said.
And so she helped arrange for the company to transport a 203-square-foot Countryside model to the Peters Township school Tuesday for the culmination of a project on which fourth-graders have been working: the annual Gnome House Design Challenge offered through Fallingwater, the world-famous Fayette County residence designed by Frank Lloyd Wright.
For the challenge, students are assigned three-inch-tall gnome figures as “clients,” with each accompanied by a detailed description sheet.
“They had to take that information and incorporate into building a home,” said Wendy Stark, who teaches with Fox-O’Kelly on the fourth-grade Team Betelgeuse.
“The students started by learning a little bit about some architecture techniques and what it takes to build a home, and they talked about sustainability, as well,” she said. “For the last four weeks, they have been building gnome homes out of recyclable materials. It’s been a wonderful approach.”
Fourth-graders Riley Driscoll and Evan Plante teamed up to build a home for a gnome who, as described, has a wife and 14 children.
“He likes to go out hiking, so we made a hiking room so he could put all his hiking stuff in there,” said Riley, plus space for the supplies he requires as a candle maker.
Another group – Isabella DiLeo, Allison Hammond and Trusson Sikora – designed and built a home for seven field mice to live with two gnomes.
“I enjoyed that we used recycled products,” Allison said. “You didn’t have to go out and buy stuff. We used what you would throw away.”
The process involved more than randomly putting materials together, as the students learned about the roles of dimensions and ratios in architecture.
“If a gnome is three inches tall, then the doorway needs to be at least three inches tall,” art teacher Kelly Rutkowski said.
The project also provided lessons for the students on the ups and downs of completing a project.
“They would fail through it, and then they’d have to problem solve and figure out, well, why is this not staying up? Or why is the paint not sticking?” Rutkowski said. “And it’s OK to fail. That’s what we tell them all the time. That’s how you learn.”
Everyone involved had the opportunity to learn firsthand about homes that may look like they’re for gnomes, but are hospitable for actual humans.
Designers Michelle Tascione and Thom Kuntz conducted tours of the 84 Lumber Countryside and told all about what goes into the miniature abodes offered by the company.
“In all of the builds, we try to incorporate as much sustainability and environmentally friendly type products as possible,” Kuntz said.
“That’s the whole logic behind this, to live smaller with less and have a smaller footprint.”
The model parked at McMurray, he said, is similar to an example 84 Lumber constructed for the “Tiny Zoo House” episode of HGTV’s “Tiny House, Big Living,” which premiered in 2017.
“This is built just like your house and my house,” Kuntz said. “There’s two-by-four construction, three-and-a-half inches of insulation. The only difference is that we put it on a trailer instead of on a concrete slab or foundation.”