The pursuit of legacy is something that is built in all humans, whether it be a conscious pursuit like parenting or more subconscious like leaving an impact on the world around you. What happens when you know your attempt at leaving a legacy is doomed? How does a parent come to terms with the fact that they are going to watch their child die?
This is the reality for the parents of three-year-old Finn, who was born with Hunter’s Syndrome, a rare, terminal genetic disease that causes an eventual loss of all cognitive ability in children. For his parents, it hasn’t been easy to come to terms with the fact that not only are they going to outlive their son, but that they are going to have to watch him die. Since the disease is degenerative, they work endlessly to try to teach Finn as much as they can in the time that he has, in hopes that he’ll lose things much slower. Most importantly, they’ve bound together with other families in the same situation, to learn to stop mourning the living, and instead fill Finn’s life with as much life as they can. Their greatest frustration is knowing that the disease is on the cusp of a cure and that Finn could end up on either side of it: either the last generation of afflicted children to die from it or the first generation to survive it.
While the dialogue and story line are heartbreaking, the visuals provide a beautiful contrast. Gorgeous shots of Finn’s happiest moments play one after the other, showing just how much life, love, and happiness he has in him, despite everything. Perhaps that makes it all the more heartbreaking, knowing just how much light is inside this life, and knowing the fragility of the situation.
Finn is part of a documentary series called Alive for Project Alive, which focuses on families that have children with Hunter’s Syndrome and aims to raise money to fund its cure.