Julie Kelley and Frank Kelley
Recorded
August 8, 2016
39:36 minutes
0:00 / 0:00
Id:
mby015211
Description
Julie Kelley (51) and her husband Frank Kelley (55) came in to StoryCorps with their daughter Marina, who has a unique neurological disorder called free sialic acid storage disorder that causes her to be non-verbal and in a wheelchair. They share favorite memories with Marina and reflect on the incredible lessons she has taught them and others.Subject Log / Time Code
Julie Kelley (JK) describes her daughter Marina's condition, free sialic acid storage disorder.
Frank Kelley (FK) talks about how having a special needs child has changed him.
FK talks about the satisfaction he gets from skiing with Vermont Adaptive Skiing and Sports. He remembers the first time Marina skied.
JK talks about her reaction to Marina's condition and what Marina has taught her.
FK describes his favorite time of the day with Marina, right as she wakes up in the morning.
JK talks about the ways she knew they were good parents to Marina, the three things she could do: say "Ma," turn the pages of a book, and give kisses.
JK talks about what Marina would say to them if she could talk.
JK describes Marina's special connection with her horse Molly and how hippotherapy (horse therapy) helped her.
JK talks about the challenges of Marina's condition worsening and reflects on learning from Marina and passing on those lessons.
Participants
- Julie Kelley
- Frank Kelley