30 Days of MD: Our Daughter Has Taught Us So Much About Life

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by BNS Staff |

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Photo courtesy of Larry Liptak

Day 4 of 30

This is Larry Liptak’s story:

“Daddy, I can’t raise my left arm.” Those words sent us on an eight-month odyssey to orthopedic doctors and neurologists looking for the cause of the mysterious malady. Dani was poked, prodded, X-rayed, and EMGed until finally, we met the right neurologist who told us she has FSHD, a type of muscular dystrophy. Dani was 13 at the time.

We first met Dani when she was 2 months old when we were stationed in Chile. Her biological mother put her up for adoption, hoping to give her a better life. We had no knowledge of her biological family’s medical history. The adoption went smoothly, and we watched Dani grow up playing sports and living a normal life until that day when we heard about FSHD.

Any parent can tell you how painful it is to watch their child battle a progressive disease that has no treatment. The falls, the tears, the fears, the dread, and the anger associated with this disease are unwelcome visitors in our lives that we confront as best we can. But there are also many unanticipated rewards as we watch Dani face her dilemma with courage and humor.

She graduated from college, traveled overseas, and worked with children with autism until the time came for her to go on disability. That broke her heart but, again, she moved forward with a courage worthy of a soldier on a battlefield.

Recently, Dani got her master’s degree from American University in Washington, D.C., and is becoming a well-known advocate for accessibility for people with disabilities here in Wilmington, North Carolina. She has made a huge number of friends here, and meeting them keeps her mom and me young.

The serenity prayer asks us to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference. That’s our beautifully amazing daughter who has taught us so much about life through her example.

Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.