Not a lot of people know what it Tay-Sachs disease is, let alone what it’s like to have a child with the condition. After a year of living with his daughter’s diagnosis, Anchorage filmmaker Dan Redfield decided to make a video to tell part of that story.
The video, “A Morning With a Special Needs Child,” documents two hours of a typical morning -- sped up and condensed into one minute.
“Two hours go by really fast when you’re doing a bunch of stuff,” Redfield said.
Shot with a GoPro camera from Redfield’s perspective, the video shows the dizzying array of steps that make up his morning routine with his daughter. Redfield wakes Ava up, exercises her arms and legs, prepares her medicines, administers them via a feeding tube and places a mask on her face to help her breathe. Cooing to Ava as he carries her around, Redfield takes her outside at one point and places her on a swingset in the sunshine.
“She’s blind at this point, but she loves the sun and the wind in her hair, and it gets the other senses going.”
Tay-Sachs is a rare genetic disorder. It usually begins in infancy and progressively destroys the nerve cells of the brain and spinal cord. Ava, a 2-year-old with pale, curly hair, seemed like a normal baby until she was a year old, when her pediatrician noticed some developmental delays. Then, an optometrist saw a cherry-red spot in Ava’s eye during an exam, a telltale sign of Tay-Sachs.
At this point in her life, Ava needs nearly constant care -- in addition to losing her ability to see or eat on her own, she can’t move much and needs help to clear the mucus from her lungs each day so she can breathe. She frequently has seizures.
Redfield is a director/producer at Anchorage film company Hybrid Color and runs his own film series, Alaska Photoventures. He said the main reason he made the video was because he and his fiancee, Kristen Frederic, are trying to document everything they can about their time with Ava. Children who have Tay-Sachs disease have a life expectancy of two to five years, and there is no known cure.
The video also gives people a glimpse of what life is like for his family. Not many people know what Tay-Sachs is because it’s so rare -- in Alaska, Redfield has not been able to find any other family going through it.
After posting the video on Instagram and Facebook, he realized other families in his Tay-Sachs network were sharing to show what they are going through too. So far the video has over 200 shares and 14,000 views on Facebook.
“A lot of people shared that video with the caption that like -- ‘yeah, real life, every day.’”