Kelly’s Story

Kelly (Ullrich CMD) is 28 years old and working toward her PhD in Creative Writing/Literature at the University of Houston. She tells her own story very well (often poetically), but she asked me, her mom, to write it for the website because she is very busy finishing up summer school teaching and getting ready for the fall semester. She also has another project – she has been spending every Sunday with my mom (Kelly’s grandma), who recently moved to an assisted living facility in Baytown near my brother (about 45 minutes from Kelly’s apartment). Kelly and Grandma have always been close, and she has been a tremendous blessing by taking her to church and “hanging out” with her on Sundays.

Kelly was born with the classic UCMD symptoms – breech presentation, dislocated hips, torticollis, feet up against her shins, very loose-jointed fingers, toes and wrists, and slender body with pronounced muscle weakness. Kelly tired easily when feeding, so it was several months before we could spread out her mealtimes to a two hour schedule. Although she was otherwise healthy and no specific diagnosis was apparent, we were warned by her first orthopedist at age 6 weeks to expect a short and dismal future for her. She had her first muscle biopsy at about 8 weeks old (inconclusive). Her second orthopedist saw that she was progressing well developmentally (although strength milestones were lagging) and was much more encouraging. He went to work on her hips, with several weeks of traction starting at age 4 months, then a series of spica casts, including an open reduction somewhere along the line. However, before she was a year old it was apparent her left hip was not improving so he referred us to a pediatric orthopedist – Dr. Kaye Wilkins, now on faculty at UT Medical School of San Antonio.

Dr. Wilkins kept her out of casts for the next six months, during which she learned to sit up, roll over, and crawl with her head dragging. She was an early talker and was speaking in sentences by 16 months. At age 18 months Dr. Wilkins reconstructed her left hip socket and femoral head. Once she was out of her casts from this surgery we experimented with various types of braces and settled on an AFO on the left lower leg with a leather insert to hold her foot down into a somewhat normal position, and a similar AFO without the insert for her right leg. With these she was able to walk and even perform ballerina turns although her gait was wobbly. She was a very accomplished knee walker, and often had her entire preschool class on their knees with her! We began physical therapy for knee and hip contractures by the time she was three. For additional stability we tried a little walker (which she detested) and so she began using a tricycle for stable mobility on the playground at preschool. She continued in this way through the second grade. She had a tendon release for torticollis (left side) at four years old and much additional testing at about the same time – another muscle biopsy, nerve conduction studies, MRI, EEG, and EMG, and for lack of an alternative was given the diagnosis of unspecified congenital muscular dystrophy. Kelly began reading at age four, made outstanding grades in all her subjects in school, and has always had excellent fine motor skills. She learned to swim at about age four (?) primarily using backstroke because her hip and knee contractures prevented efficient prone swimming.

We moved from south Texas to Chattanooga, TN, where Kelly attended third grade through high school. Due to the hilly terrain, we obtained a wheelchair for safe outdoor mobility as well as for longer distance travel indoors. Walking with only AFOs for support was gradually becoming more difficult, so she tried a walker again before settling on crutches – which she still uses at age 28 for short distance mobility. Kelly attended private schools and had no specific accommodations for her disability except that she was allowed extra time when needed to travel from class to class, and was the only physically disabled student in her school. She participated in physical education by developing her own adaptations as needed. She had piano lessons beginning in the second grade and learned guitar while in high school, and obtained her driver’s license on her sixteenth birthday. At age fourteen Kelly had surgery (orthopedist was Dr. Richard Pearce) fusing her left ankle at approximately 90 degrees, increasing its comfort and eliminating the need for the leather insert in her brace. She still has a prominent calcaneous, however.

For high school Kelly had a scholarship to a private, academically rigorous girls’ prep school, where she competed in public speaking and was in the choir. Additionally she was a coxswain on her school’s crew team, traveling over much of the eastern US as a part of this very competitive group of athletes. Kelly was selected for and attended Tennessee’s Governor’s School for the Visual Arts between 11th and 12th grade. She has always had a wide group of wonderful friends and was a full participant in school and church activities. Almost universally her teachers and coaches were wonderful mentors, encouraging her “can-do” attitude toward whatever she attempted.

Kelly chose to stay close to home for college, attending UT-Chattanooga and double-majoring in art and English. However, her parents moved away from Chattanooga after her freshman year, so she shared an apartment with friends thereafter. She graduated cum laude in five years after winning numerous awards for both her art and her poetry, and traveled with a group of UTC literary students to conferences in Slovenia and Italy in the summer before her senior year. Kelly worked part-time at Rock City (a Chattanooga tourist site) and in the UTC Writing Center throughout her college years for spending money.

Kelly obtained her MFA in creative writing at the University of Houston and is currently working toward her PhD. As a part of her funding she teaches English Composition and Introduction to Poetry at UH. Kelly has been to Europe again, this time to Poland for a poetry conference, as well as traveling to several writers’ conferences around the US. Kelly’s UCMD diagnosis was made in 2005 when her mom first encountered a description of the condition, and Dr. Bonnemann’s conference in 2006 was the first time we met anyone else with Kelly’s unique physical characteristics. Her contractures continue to slowly increase and her spine is quite rigid (but without pronounced scoliosis), although her pulmonary involvement is still relatively minimal. She uses her crutches indoors, even on stairs, and gets her wheelchair in and out of her car by herself. She swims and rides her three-wheeled adult bike for fun and exercise. As always, she has a great group of friends, a cheerful spirit, and expectations for a bright future.

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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