Pray.
Fight.
Hope.
Landry’s Story
Landry joined our family on March 11, 2019. We loved her from the moment we found out about her, she was a surprise to us, but perfectly planned by God. Her big sister, Quincy, welcomed her home with lots of kisses and squeals of excitement. From Landry’s first moments she favored a concerned look with furrowed brows, loved to snuggle to sleep, and seemed perfectly healthy.
My career as a pediatric physical therapist left me with a nagging feeling that there was something neurological going on. That fear was realized when at 5 weeks old Landry presented at home with seizure like activity: nystagmus, repetitive mouth movements, and repetitive extremity movement. Landry was admitted to the hospital that afternoon, an EEG was completed that evening and MRI scheduled for the next morning. Both would be normal. While coming out of sedation, Landry again presented with seizure like activity that did not cease with rescue medications. In order to control what the doctors thought was a seizure she was sedated, intubated, and placed on a ventilator. She was also placed back on video EEG for continuous monitoring and treated with anti-seizure medications. These were the most terrifying moments of my life. For days the images played back in my head. Family surrounded us, compassionate and competent nurses and doctors served us and our baby so well. Prayers covered her.
The EEG was normal for more than 24 hours. After two long days, she was extubated and I was able to hold her. It was a seemingly long awaited and joyous reunion, until bouts of bradycardia, apnea, and, most disheartening, seizure like episodes returned. The EEG was applied again. Multiple episodes were caught on the EEG, and did not reveal seizure activity. These hours were heartbreaking. She looked nothing like our girl, especially her eyes. I shook with fear that my baby would not return. As we began to wean her off all medications and she was able to breastfeed, our girl started coming back. Her furrowed brows returned, she gave us some big reassuring smiles, and her episodes decreased.
We left the PICU after a 6 day stay with seizures that weren’t seizures, no infections, normal imaging, awaiting metabolic and genetic panels, and differential diagnosis of a possible movement disorder. During the next 5 weeks we waited anxiously. I watched and analyzed every movement meticulously. I scoured article after article for differential diagnoses and memorized her labs. I waited, afraid for the next episode. Every 4-5 days Landry would have an episode of varying duration and intensity. After sending multiple videos of her episodes to the neurologist and raising concerns for continuing seizures, she had an episode at the ophthalmologist. Sure that Landry was having a seizure, EMS was called. This time we left the ER with a different anti-seizure med. We came to our follow up neurology appointment thinking that Landry was having seizures, maybe she had a form of epilepsy, and her new medicine was managing it. We were hopeful.
It was at that appointment, we learned our 10 week old baby had a mutation of her ATP1A3 gene. It was the first time we heard the words “Alternating Hemiplegia of Childhood” (AHC), and our lives were forever changed.
Landry is literally 1 in a million. AHC is a very rare and devastating neurological disorder, characterized by transient attacks of paralysis in one or more extremities. Episodes may also include dystonia (stiffening of the body), hypotonia (low muscle tone), and uncontrollable eye movements. Half of the children with AHC develop epilepsy.
Currently, there is no cure. The episodes are neurodegenerative. We can hope to manage episodes and slow progression, but there is no specific medicine that works for either. However, there is promising gene therapy research that we desperately need to come to fruition and that desperately needs funding.
We are grieving our hopes and plans for our family, for Quincy, and most specifically and devastatingly for our sweet girl and the long road that lies ahead of her. But, even the grandest of dreams we have for her pale in comparison to the plan God designed for her.
John 9:3,4 3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. 4 As long as it is day, we must do the works of him who sent me.
Landry was made intricately and delicately, every detail of her creation was planned and on purpose. She was not made to fulfill my dreams, she was not made for me or by me. She was made by God and for God. “Parenting is not first about what we want for our children or from our children, but about what God in grace has planned to do through us in our children.”
He knows what He wants to do through Landry, we are only tools. Our prayers is that He would use us to the uttermost.
We feel a strong conviction to do whatever we can for Landry, for His glory, to reach a cure. This is a race, this is time sensitive. Run with us.
FOR LANDRY.
