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.