Against the Odds

Eighteen candles


Diagnosed with a rare form of muscular dystrophy shortly after birth, Hannah Hartley is a medical miracle. She celebrated her 18th birthday in November.



By Hope Timmermann

Hannah Hartley’s 18th birthday is more than a teenage milestone; it’s something of a miracle.


At birth, she didn’t breathe or move. Limp like a doll, she had no muscle function. Soon after, doctors diagnosed her with centronuclear myopathy, a rare form of muscular dystrophy, and told her parents that she had less than a year to live. Usually found in males, the disease afflicts fewer than 200,000 people in the U.S. The fact that Hannah is a female makes the diagnosis even more uncommon.


But today, everything is her favorite color pink, from the punch to the balloons and the tablecloths. She is celebrating her birthday in her hometown, Hallsville. Her parents Rob and Donya, family members, friends, nurses and Hannah’s former doctors celebrate and sing an exuberant birthday song. There are smiles, roaring applause and playful exclamations. “Watch out, she’s legal!” Everyone is in high spirits, save a few tears from Donya when she reads Hannah her birthday card and takes her in a motherly embrace.


  • Rob Hartley blows out birthday candles for his daughter, Hannah, using her breathing tube.

    Rob Hartley blows out birthday candles for his daughter, Hannah, using her breathing tube.

  • Among the friends and family helping to celebrate Hannah Hartley’s 18th birthday is her doctor, Pat Wankum of the UM Children's Hospital.

    Among the friends and family helping to celebrate Hannah Hartley’s 18th birthday is her doctor, Pat Wankum of the UM Children's Hospital.

  • Donya Hartley, Hannah’s mother, plants a kiss on her daughter’s cheek after reading her birthday card out loud.

    Donya Hartley, Hannah’s mother, plants a kiss on her daughter’s cheek after reading her birthday card out loud.

Hannah’s father looks on, radiating pride for his daughter. Her life might not be typical of an 18-year-old’s, but she proves the statistics wrong just by living it.


“What amazes me most is her willpower to fight for her life,” Rob says. “She’s stronger than anyone I’ve ever met, and she has fought to do what she can in life. It makes me very proud that she doesn’t give up.”


Hannah uses a wheelchair to get around and perform tasks such as turning on the TV. Basic movements and activity are possible with a controller that Hannah moves with her right thumb. A ventilator and a cough-assist machine help her breathe, and she uses a feeding tube for meals. It’s a freeing experience when she gets out of her wheelchair once a week.


On Thursday afternoons in the spring and fall, Hannah rides her favorite horse, Buddy, at the Cedar Creek Therapeutic Riding Center. A sling hung from the barn’s ceiling transports Hannah from her chair to Buddy’s saddle. From there, with a guide sitting behind her for safety, Hannah and Buddy leisurely trot around the barn.


Hannah especially loves the connection she has with the horse. “Buddy can feel my pain,” she says. Visiting the riding center and her four-legged companion can turn her day around. Buddy is calm and patient with Hannah, and though he’s a horse, he seems to look at her with a kind of admiration — soft and gentle.


Aletta Kyd, who rides behind Hannah, thinks that the communication Buddy and Hannah have is one of a kind. She says they speak to each other through body language. The two have matching lively spirits, and Buddy often rests his head almost in Hannah’s lap. One of Hannah’s cakes at the birthday party had a picture of Buddy on it.


Her weekly riding session and listening to her favorite music (Justin Bieber, of course) give Hannah’s life more normalcy, which is what she and her family want.


“We’ve all adapted and adjusted to take care of Hannah,” Rob says. Donya agrees, saying, “She’s the princess.” Far from being spoiled, she has lived each day working to overcome her medical struggles.


On Nov. 3, Hannah took in the celebration in her honor. She smiled often and playfully said, “Gracias!” to everyone for attending. The day was a testament to her joyful spirit, and positive, encouraging words surrounded her. When she was born and diagnosed years ago, the mood was less optimistic — yet here she is today, blowing out 18 candles on one of her cakes that reads, “Happy Birthday Princess.”



Browse more stories

Browse portraits