UPDATED: Brandon Chapter Moms Support All Children’s Hospital Guild

Janine Pettigrew is certain of one thing: “There are just too many sick kids,” she said.

And it is that belief, and her own life experiences, that propel her to work tirelessly for the All Children’s Hopsital Guild and its Brandon chapter, which raised more than $2,220 at a Bunco dice-game fundraiser at The Bridges in Riverview.

On sale, too, was artwork created by All Children’s patients, suitable for framing and priced at $25 apiece.

The Brandon guild chapter meets monthly at the All Children’s Specialty Care of Brandon on Parsons Avenue.

“We need to make sure that in this economy the center survives and that these services are available into the future,” said Pettigrew, who with her friend and neighbor, Leslie Mazen, serves as the guild chapter’s co-presidents.

The neighbors have more in common than a huge heart for sick children; they understand firsthand the undying need a mother has for anything and anyone who can care for children with illnesses that surpass regular medical attention.

“I’ve lost a child at age 3,” Pettigrew said. “We were on vacation and she started saying things to me like, ‘You’re my mommy, forever and ever’ and she got this terrible cough and her belly looked big. My cousin works in research at Boston Children’s Hospital and I called him and said, ‘There’s something terribly wrong with Jillian and I’m scared to death.”

Pettigrew did not know that her daughter, Jillian, had a genetic predisposition to hemophagocytic lymphohistiocytosis,  a disease that strikes 1.2 children in every 1 million children under the age of 15, according to the Histiocytosis Association of  America. The disease is extremely rare but, as Pettigrew put it: “It’s a rare disease until your child gets it.”

Her other two children have markers for the disease,  so “once a year we got to St. Pete to get blood tests and we watch out for fevers and swollen lymph nodes,” Pettigrew said.  “We happily go, because I can’t even tell you the  peace of mind I have knowing this doctor there, an immunologist rheumatologist, and we get labs drawn here in Brandon.”

When Jillian died, Pettigrew called Mazen, who herself is a frequent visitor to All Children’s Hosptial, with her son, Jesse, who has cystic fibrosis. Her oldest son, Jordan, has autism, and her son Zachary, 16, is asthmatic.

“All Children’s is one of the only places you can see different specialists that correspond with each other about your child’s care,” Mazen said.

It doesn’t save all trips to All Children’s Hospital in St. Petersburg but that’s okay for Mazen. The guild supports the hospital’s efforts and Mazen is a big fan of that. As she put it: “People think All Children’s Hospital is so far away but when you need it, it is not far away. When you need that kind of care you feel like it’s in you backyard. All the children in All Children’s Hospital have single rooms and they have the capability for a parent to stay with a child at all times.”

Together, the mothers fight valiantly for their own children, but also for the parents and the kids who avail themselves of All Children’s services closer to home.

“You have no idea what it means to have a center like this in the community. It’s just incredible,” Pettigrew said. “It saves me from driving to St. Pete all the time but the more wonderful thing is I don’t have to fly my children to Boston Children’s Hospital or Cincinnati Children’s Hospital for world-class care. I can find that here in Brandon.”

As for her work with the guild, Pettigrew said that is a no-brainer.

“It makes me feel like Jillian’s life is not in vain,” she said. “When I’m on my way out to a meeting here, or if I can make a difference in the life of one child or one parent, I feel like Jillian is sitting here right with me. For me, this is the way it has to be. This is how I can live.”