‘A miracle.’ After baby beats catastrophic diagnosis, Texas family turns to helping others

After receiving their own miracle, Kristie and Gabe Greiss are now working to help other families experience the same.

During the middle of the night 11 years ago, Gabe was changing his daughter Mickie’s diaper after a 2 a.m. feeding. A beautiful moment suddenly became a nightmare. Something was gravely wrong with his baby girl and he had no idea what she was suffering from.

“I was holding Mickie in both of my hands, after burping her, and her arms went straight out, her eyes rolled back into her little head and her entire body became stiff as a board,” Gabe recalled, still emotional at the memory. “This went on for 15, 30, 45 seconds and then abruptly stopped. I knew instinctively it was a seizure and was immediately scared and overwhelmed.”

Over the course of the next 48 hours, the Greisses were taken by ambulance from one hospital to the next until they were taken into a stark white room. There they were told Mickie was diagnosed with one of the most catastrophic forms of childhood epilepsy, infantile spasms, and that she would probably never walk, never talk, and that she may die.

The Greiss family needed a miracle.

The battle to save their child’s life ultimately led them to a Level 4 dediatric epilepsy center at Children’s Health of Orange County Hospital in California, where they lived before moving to Grapevine six years ago, and world renowned pediatric neurologist, Dr. Mary Zupanc.

Zupanc shared with them that Mickie was a brain surgery candidate. After failing eight medications in 10 months and watching her rapid developmental decline, the day before her first birthday, a surgeon removed Mickie’s parietal, occipital and temporal lobes of her left hemisphere with the hope of preserving some of her life — whatever that life might be.

“I was very afraid and uncertain about whether my sweet little girl could survive, let alone have quality of life — and at the same time very determined and strong to do everything possible to help save her,” Kristie said. “I leaned on my faith and knew I had to listen to God and my mama bear instincts and keep pushing for answers and hope.”

How MM got started

Kristie’s prayers were answered with a now 11-year-old Mickie enjoying a life that includes going to school and enjoying an active kid’s life in a variety of ways. She takes dance classes, voice and piano lessons and loves swim class.

“Mickie is the definition of a miracle and we want to create more success stories and miracles like Mickie,” Kristie said.

And that is exactly what they strive to do with their nonprofit Mickie’s Miracles. The Grapevine-based program advocates for parents to get their child an urgent diagnosis and the highest level of care at Level 4 pediatric epilepsy centers. They also increase awareness about the catastrophic dangers of pediatric epilepsy, along with working with rare disease organizations to lobby Congress to help with their cause, such as passing the Seizure Safe School Act, which includes a written plan at schools to be prepared to handle seizures and the administration of seizure medicines.

In the months and years that followed the surgery and as Mickie underwent therapy, those therapists would share Kristie’s number with parents of other little babies who had undiagnosed or uncontrolled epilepsy. She spent about two years at her kitchen table on her own telephone hotline when she realized the need was so critical that it was important to formalize her mission. She decided to establish proper procedures for supporting and engaging parents and children facing this brain-attacking, life-threatening disease.

And so she founded Mickie’s Miracles in 2015, named after little miracle, who is now a thriving, funny, sassy fashionista fifth-grader who loves to sing, dance, cheer and play soccer.

“It’s a comfort to our family to know there is an organization like Mickie’s Miracles out there always fighting for families and paying it forward,” said Carrie Mamantov, a parent and disability advocate.

“What we had to go through when our daughter was an infant was so scary and stressful. We don’t wish that on anyone. Thankfully, Mickie’s Miracles is here to help.”

Though based in Grapevine, Mickie’s Miracles provides support to families wherever they may be. Locally, they partner with Cook Children’s Hospital.

“We guide families to the front door of hospitals to access specialized epilepsy care across the country. We are 100 percent committed to connecting every family with the tools, knowledge and emotional support essential to navigating their child to a proper diagnosis and treatment,” Kristie said.

They are also working on expanding their Caring for Caregivers Mental Health Program. The five-year vision includes Grapevine becoming the hub of mental health care for caregivers of all medically complex children, regardless of underlying condition, Kristie noted.

Mission of urgency

Urgency is Mickie’s Miracles mission, stressed Executive Director Dario Herrera.

“It’s important for parents to act with extreme urgency if epilepsy is suspected. Every minute, every day really can make a difference between quality of life and permanent brain damage — or even death,” Herrera said.

“We ask parents to pay close attention to their parental instincts and to never take no for an answer. Their advocacy and actions on behalf of their children is of unparalleled importance.”

Kristie cited statistics from the Center for Disease Control that show over 470,000 children nationwide have epilepsy, an ailment that affects one in 26 people worldwide and more than autism, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.

Even now, though Mickie has been seizure-free for over 10 years, Kristie said she still has moments of PTSD. It’s possible she may never be able to put the traumatic memories completely behind her.

“It’s just below the surface with me at all times and can come rushing back — whether it’s thinking about what Mickie’s tomorrow looks like, while I’m helping a family going through it, or like recently when Mickie’s doctors told us she was having too many concerning spikes in one of her more recent long term-monitoring stays at the hospital,” Kristie said.

“I’m more aware than ever of the importance of prayer, having faith in God and releasing control, meditating, moving, eating nutritious food and getting ample rest. All of that self care helps — and still I know I’m never too far away from the potential of a mental health challenge.”

She pours all of this into making her a stronger advocate for the children and families Mickie’s Miracles helps.

Funding

Mickie’s Miracles gets funding from a wide array of sources. The primary source comes through grassroots, word of mouth fundraising and events — like the Toy Drive they held this past December that resulted in a contribution from Southside Bank and a number of local residents.

They also receive funding from industry partners that share their vision for seizure free. Kristie said the board of directors and medical advisory board also serve as important connectors for funding.

Gabe is also in the medical field as the CEO/founder of Excel Medical Staff.

©2023 Fort Worth Star-Telegram. Visit star-telegram.com. Distributed by Tribune Content Agency, LLC.