Born with a rare genetic disease called hypophosphatasia, where your bones don't mineralize correctly. Most die within four months to a year, but a miracle drug saved Evie's life for five years now. Evie sucks sugar off Lindsey's finger during an electroencephalography test that records brain activity. Doctors discovered Evie was having multiple seizures an hour, but they were rarely outwardly visible.
Lindsey prepares an injection for Evie at their home in Omaha. The injections are part of a clinical drug trail for kids with hypophosphatasia, and are the reason she is alive to this point. "Without injections Eve had a 50/50 chance of making it to 18 months," Lindsey said. "Her bones would have demineralized until she couldn't breathe. She would be on ventilated support until she died."
Lindsey listens to the findings of social workers and therapists working with the Omaha Public School system. They evaluated Evie's condition when she was five months old. Evie was categorized in the 1% for babies her age.
Dr. Puccioni, a neurosurgeon, explains to Lindsey and John three sutures in Evie's skull are closed, which is why her head is growing up instead of round, and that doctors will need to perform decompression brain surgery.
Lindsey sits with Evie as Lyla plays on the couch during a play date with kids who have Down syndrome. "If I go to a play group with normal kids I get asked questions about how she is doing or how I feel about something that happened," Lindsey said. "We aren't outsiders here, we fit in more."
Lindsey laughs with Evie.
Lindsey, John and Evie dance at a wedding in Omaha. "I feel safer if she is with me," Lindsey said. "I think leaving her with people makes them nervous, but makes me even more nervous. Her seizures, her breathing problems and her pain."
Lindsey, Evie (right), John (middle), Lyla and Lindsey's sister Kelsey (left) swim at Lindsey's parents house in Omaha. It's often the only time we get to relax Lindsey says.
Lindsey plays with Evie. "I think that not expecting her to survive before she was born, God is helping us find joy in the little things, because we didn't think there would be any things," Lindsey said.
Lindsey stresses over Evie's brain surgery the next morning while folding clothes late into the night. Leading up to the surgery Lindsey became scared, often crying while holding Evie in bed in the mornings, as she thought about the possibility of Evie coding, which had happened twice already, or the surgeons nicking a large vein in her head, creating brain damage.
Doctors stitch Evie's skin together after reconstructing her skull. They had intended to cut her forehead into just three pieces, but instead needed to cut 20.
Lindsey, John, Lyla, 3, and Evie pray together at Children's Hospital & Medical Center in Omaha two days after surgery. The swelling moved from her forehead into her eyes, cheeks and around the back of her head so her ears were turning in. She could not open her eyes for a few days.
Lindsey and John blow up 365 balloons to celebrate Evie's first birthday with more than 100 guests at their home in Omaha. "This past year has been a humbling, challenging, life-altering, blessed year and it's been like a blur," Lindsey said.
Lindsey talks with Evie at a park near their home. "We have no idea how she will progress or what her future holds," Lindsey said. "We are going to celebrate her own milestones."