Ellie Valentine’s father-daughter dance with her dad Seth at her recent wedding was an emotional moment she never dreamed she would get to experience. When she was 7 years old, he was diagnosed with ALS. His life expectancy was just 2-5 years.
But 16 years later, he is still alive—and got to walk his daughter down the aisle.
“My mom walked me to the end of the aisle [on level ground] where my dad was carried to by the groomsmen,” Valentine tells Upworthy. “I then put my bouquet in his fragile hands, gave him a kiss on the forehead, and pushed him down the aisle. So sacred.”
The father-daughter dance
In Valentine’s tearjerking video, she shares her first dance with her dad, who is laying in a self-designed “wheel-bed” that allowed her to push him on the dance floor to the Jonas Brothers’ song “Little Bird”. Her mom Amy and husband Brenton also joined in on the special moment.
“I’ll never forget my mom wheeling my dad into the middle of the dance floor, everyone dancing around him, my dad beaming with joy,” Valentine tells Upworthy. “I don’t think anyone in my house slept for days after that high.”
The song was a meaningful choice made by Valentine via a friend’s suggestion.
“I immediately knew it was the song for our daddy daughter dance. I sent it to my dad and he immediately started crying, sharing it with his caregivers around him,” she says.
The lyrics were incredibly personal to her relationship with her dad.
“When my mom was pregnant with my older brother, my dad told her if it was a girl then she would be an only child because he would spend the rest of his life protecting her,” she explains. “When I was born, he cried and cried every night by my crib. He would pray for me, and pray for my future husband. ‘Little Bird’ could be written from his perspective in that moment.”
She points out this verse:
“Walked down the aisle, breakin’ my heart
Lay down my pride, I know I gotta let you go
‘Cause he’s gonna love you when I gotta leave you
Gotta believe it when the Lord takes me home
…Please just keep me in your heart
When you fly into somebody else’s arms, little bird.”
The self-made “wheel-bed”
Valentine’s dad Seth was an Ironman, a coach, and father of four young kids when he was first diagnosed with ALS. However, the family adapted to his new needs.
“My family has lived life differently since that diagnosis, never saying no to an adventure and always reminding each other how much we love each other,” she tells Upworthy. “We moved to Hawaii, backpacked across Europe, started a non profit car show, remodeled 3 houses, and so much more.”
She notes that compared to others with ALS, his disease progression has been slow.
“Our family has been given the gift of time,” Valentine adds. “We have had so much more time together than we anticipated.”
But over time, he has lost more and more of his mobility and independence.
“Five years ago he became unable to sit without choking and became dependent on a CPAP machine. He now uses a eye gaze computer (a computer that sits above him while he is laying down, with a camera that tracks the back of his retina so he can select and have complete agency to speak, text, and have access to the internet),” she explains.
It led him to collaborate with a close family friend, Fred Conlon of Sugarpost Metal, to design a “wheel bed” using his eyegaze computer that would help him get around more easily.
“It could fit in our wheel chair van, and get him places like his children’s sports or schooling events or church,” Valentine explains. “The original wheel bed has been replicated and refined many times in different materials, sizes, or with more wheels. The wheel bed now is carbon fiber, folds in half for simple loading, and has removable wheels. All these adjustments are made for us to move more agile and to make his care more comfortable.”
Valentine’s dad and their family started a nonprofit called ALSCrowd, dedicated to helping families affected by ALS.
Viewers respond
The emotional video of Valentine dancing with Seth and her mom and husband garnered lots of sweet comments from viewers:
“I know your daddy was happy he made it to this gorgeous day!! My husband has been diagnosed 18 years this year and ALS stole our chances to be parents in the cruelest way! This makes my heart joyful to see such beautiful special moments!! Congratulations Valentines to a million more memories.”
“I just love the way the mom moves. Not defeated and sad but triumphant and joyful! Like look at us all together! How awesome!!😍😭💕”
“The most tender moment 😭❤️.”
“He was THERE that’s all that really matters. As a daughter who lost her dad, her HERO, I can tell you, his only presence is the most beautiful gift you can have!🤍👏😢🙌”
“This is the most beautiful father daughter dance I have ever witness!!! Crying because to be loved, and to love like this is what life is all about 🥹”
“This fills my heart 🤍 my dad lost his ALS battle a year before I was married, making it so bittersweet. I’m so glad you got to experience this with your daddy ❤️🩹.”
“This is the most beautiful thing I have ever seen.”
