Patrick’s Way
This is our son, Patrick. He’s 16 years old, and we live together as a family in Singapore. Handsome fella, isn’t he?
This was a great morning. On days like this, Pat loves to take long walks through the jungle trails near our home and we’ll often stop at a café for a pastry and a drink on the way home. Sometimes, we even finish the morning with a refreshing swim. These moments bring us so much joy--but days like this are rare. Patrick lives with a neurological condition called Alternating Hemiplegia of Childhood (AHC), which affects his ability to move, communicate, and engage in the world as freely as he’d like.
This afternoon was not so great. Patrick became paralysed from head to toe. He cried in pain for hours, and every muscle in his body was gripped by cramp-like dystonia. We gave him some medicine but today it didn’t have any effect. There’s no really effective treatment for his condition. Eventually he fell asleep and the paralysis subsided: hopefully tomorrow will be better.
AHC can cause sudden episodes of paralysis, seizures, and developmental challenges, making daily life unpredictable and often difficult. Despite these challenges, Patrick faces every day with incredible resilience.
We’re asking for your help to support CureAHC, an organization dedicated to funding research that is seeking a cure for AHC. The gains that have been made already give us real hope; these include the recovery of mice with the same genetic mutation to the ATP1A3 gene that Patrick carries through a gene therapy treatment.s
Your generosity could make all the difference for Patrick and others like him. Together, we can create more "good days" and bring hope to families who dream of a brighter future.