St. George family to share their story on MDA telethon
By Annie Knox
The Salt Lake TribuneFirst published Aug 31 2013 07:26PM
Emmy Thomas, 3, works on princess puzzles and ties her dad’s shoelaces. She speaks her mind at home but tends to pipe down around others.
When his hands still worked, Ben Thomas, 32, typed advice to his daughter on the family MacBook: "Be bold, because everybody loves your personality, your strength and your willpower."
As amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, immobilized his hands, he switched to a dictation program. His speech has since turned too muddy. So family members, including his wife, Jena Thomas, his sister and others, take down notes for Emmy to open when she’s older.
"I don’t want her to have to ask other people what I was like. I want her to get her own sense" of her dad, Thomas said, and to know the ways she makes him proud.
The St. George family will share their story Sunday on the "Muscular Dystrophy Association Show of Strength Telethon," one of six families nationwide that will be featured.
Thomas’ muscles are losing touch with his brain. The family found out his diagnosis four months after Emmy’s birth.
ALS goes after the respiratory system, so Thomas has developed a bad cough. Jena Thomas helps quiet those fits with a glass of water and a cough drop. But Emmy has taken on that duty, too.
"She’ll get me a drink and a cough drop and say, ‘Dad, Dad, are you OK now?’ And I’ll say yes and she’ll say ‘OK, good,’ " her dad recounts. "She’s awesome."
The disease affords Emmy’s parents an opportunity that most couples don’t get, said Jena Thomas, 31. They spend every day together. For the past three years, she has shampooed and shaved her husband. She helps him into slacks and T-shirts and with using the toilet, too.
"That’s been a chance for me to say, ‘I love you no matter what. I don’t care if your body doesn’t work. I love you for you,’ " she said.
She imagines she will some day print out her husband’s letters to their daughter. But she doesn’t read them now. She doesn’t want to think about it.
The Utah MDA community knows the family as a giving one, determined to make the most of each moment, said Annie Nicholson, who meets with them a few times a year as the health care services coordinator for the Utah Muscular Dystrophy Association.
They are an example of strength and grace, national MDA President and CEO Steven Derks said in a statement.
Thomas is a former hiker, biker and real estate appraiser. Now in a wheelchair, he listens to audio books and helps Emmy with her puzzles by parking alongside her and pointing out pieces to grab. She teases like her dad, her parents say, but she’s hardheaded like her mom.
On a recent weekday at lunchtime, dressed up like Rapunzel, she called out to him, laughing, while he chatted on the phone. How was he doing? What was he up to? What game came next?
"I don’t want her to ever feel," Thomas said of her spunk, "like she has to hide it or be scared to show that."