Landry joined our family in March 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. However, at 5 weeks she presented with seizure like activity and so we began a scary road to a cruel and severe diagnosis.
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.
There is no cure currently. The episodes are neurodegenerative. We can hope to manage episodes and slow progression, but there is no specific medicine that works for either. However, the AHC Foundation, Cure AHC, and Hope for Annabel have partnered together to lead the charge in promising gene therapy research that we desperately need to come to fruition and that desperately needs funding. Landry's future depends on it.
