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. 

Learn more about Landry here.

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. 

With funds raised from the AHC Foundation, we will support AAV gene therapy and other research related to the project.  We believe a path has been identified to a viable permanent treatment: gene therapy.  The gene therapy we propose will involve inserting a functional copy of the ATP1A3 gene into a virus (an adeno-associated virus or AAV) that has been stripped of its harmful payload and its ability to reproduce. The virus will then be injected into the cerebrospinal fluid and will carry the functional gene to the cells in the brain that are failing. By delivering additional functional copies of the gene, we should be able to rescue those cells, and treat the disease permanently. 

Learn more about the project here.