“All the tests came back normal, so we breathed a sigh of relief. But in the back of my mind, something didn’t feel right,” recalls Stephanie when her daughter Mackenzie was born in 2005 with a small head circumference. “We were unaware of the challenges that life was about to throw at her.”
Stephanie’s instincts were right. Within a few months, Stephanie and her husband Patrick noticed Mackenzie was not hitting early developmental milestones. Suddenly, at 5 months old, Mackenzie started to have seizures.
Mackenzie was diagnosed with lissencephaly, a rare neurological condition where the brain doesn’t develop properly. In addition, she suffers from a complex and severe type of epilepsy.
“After the initial shock of Mackenzie’s diagnosis, we decided to get her the best resources to help her reach her full potential. We want her to have as happy and healthy of a life as possible,” Stephanie recounts.
Sharing the same goals for Mackenzie, Children’s Miracle Network Hospitals was there to help. “CMN Hospitals provides much-needed support, filling the funding gap that often exists for families. That safety net has been a relief to us,” Stephanie explains.
Due to her conditions, Mackenzie has had numerous surgeries, and medications and diets to control her seizures. CMN Hospitals provided meal vouchers and gas cards while Mackenzie was hospitalized and helped remodel a bathroom in the family’s home to make it wheelchair accessible.
“Now Mackenzie’s doctor has recommended implanting a device to reduce the frequency and length of her seizures, hopefully with less medication. CMN Hospitals is providing a gas card for the trips to Madison and meals while we’re at the hospital. We greatly appreciate the help,” say Mackenzie’s parents.
Despite her challenges, Mackenzie is thriving. Her parents say, “Lissencephaly can be extremely severe or so mild that children go on to lead normal lives. Mackenzie falls somewhere in the middle. There’s no manual on what to expect. She’s driving and we’re just along for the ride.”