On October 10, 2018, we were elated to finally meet our second daughter, Mandy. She was a healthy 8lbs, had a head full of dark hair and was absolutely beautiful. We were so proud and excited to take her home and start our life as a family of four.

Mandy had been in the nursery on the morning of our discharge, we were trying to catch a quick nap before heading home. Just hours before we were to leave, a nurse entered our room and told us our baby was having a seizure. They had us wait in our room until further notice. We sat in complete agony and prayed she would be okay. How could this be happening to OUR baby?! We called our families and told them we wouldn’t be coming home today, instead Mandy would be transferred to the NICU at a neighboring hospital.

What seemed like hours passed before they came to get us. We walked down the hall to a large room where concerned doctors and nurses were trying to stabilize Mandy, breathing for her and trying to help her recover from several more suspected seizures. The scene before us had us pleading with God to spare her life.

Mandy spent the next 10 days in the NICU and was discharged as her blood tests, MRI, EEG and spinal tap all came back normal. She was sent home on seizure medication and we hoped and prayed this was all something she would “grow out of.”

We were home for almost two weeks enjoying life with both of our girls when we noticed Mandy was having abnormal rapid eye movements, posturing and floppy limbs-all what appeared to be more seizure activity.

We rushed to the emergency room and were admitted to be monitored overnight. Nothing could have prepared us for how the next day would unfold. After bathing Mandy, we noticed her eyes started bouncing and shaking- followed by body twitching. The room was soon filled with doctors and nurses, all trying to make sense of the events. Her symptoms turned into arching and posturing- followed by writhing and screaming. Rapid response was called as her oxygen levels kept dropping, all while medications were still unsuccessfully controlling her strange movements. Another rapid was called and they wheeled her to the ICU for intubation. After hours of trying to stop these seizures and sedate her enough for flight, Mandy and I (Katie) were flown to a children’s hospital 3 hours away.

For the next month we met with countless nurses, doctors, and neurologists trying to find answers for our little girl. All the tests continued to come back normal, including EEGs confirming NO seizure activity. It wasn’t until another ER visit and transfer to a different children’s hospital that the doctors were finally able to identify true seizures on EEG. After our second transfer to this children’s hospital just 5 days later, the three of us (Mandy, mom and dad) all had our blood drawn and sent out for genetic exome testing.

We received her genetic test results a week before Christmas. It confirmed Mandy had a random, un-inherited genetic mutation on the ATP1a3 gene that results in an ultra-rare neurological disease called Alternating Hemiplegia of Childhood (AHC). There are roughly 1200 diagnosed cases of this disorder worldwide.

Our frantic, teary eyed internet searches continued to scare us. With the limited information, and the prognosis that comes with AHC, our hopes and dreams for Mandy were crushed. The complexities and symptoms of this disorder are cruel and evil and we couldn’t understand why God would allow this to happen.

Although we would have never chosen this path for our daughter and our family, we firmly believe God does not make mistakes. Mandy is fearfully and wonderfully made and her life continues to reveal the power of God to those who meet her. Her fearless (and beautiful) smiles after traumatic days of paralysis or dystonia remind us that every day is a gift. Her challenges are unique and extreme but we are always surprised at how she continues to pull through. Mandy’s perseverance through it all inspires us.

Through this adversity we are gaining a better perspective of what should be valued in life and what really matters. From the day Mandy was born, our friends, family and church family have showered us with their generosity. People brought meals, sent cards and gifts, cleaned our house, mowed our lawn and bought our groceries. This experience has brought to our attention the needs of those around us. It has truly helped us transform our lives, hearts, thoughts, and goals in the best way possible. Some needs are small and others are large, but you and I may be able to provide a ‘miracle’ for those around us by volunteering our skills, time, money or love.

We have chosen a butterfly to represent Mandy in her logo. Butterflies are fragile- just touching their wings can harm them. They are beautiful and unpredictable and their transformation into a butterfly is nothing short of miraculous. Butterflies also symbolize hope, and we have unshakable hope for Mandy!

When the weight of Mandy’s condition weighs down on us, we force ourselves to remember that we are not in control. We know and trust God has incredible plans for Mandy’s life. We may not understand them, but we believe His way is best.
“but this happened so that the works of God might be displayed…”
John 9:3