Shelby Jackson’ story with Facioscapulohumeral Muscular Dystrophy

Shelby Jackson enjoyed her first high school prom recently and never let the fact that she is confined to a wheelchair slow her down, not even on the dance floor.
The Lufkin High School junior went to prom with her longtime friend, Kelly Hill. Andy Adams, editor of The Lufkin News, photographed the couple on the dance floor, and a national organization has requested to use the photograph in an upcoming brochure.
When Jackson was 7 years old, she was diagnosed with Facioscapulohumeral Muscular Dystrophy. Her parents, Shorty and Jennifer, said they realized early in their daughter’s life that something was wrong.

Jackson and Hill

Shelby Jackson, 16, and her prom date, Kelly Hill, enjoy a dance at the Lufkin High School prom earlier this month.

Fighting back tears, Jackson’s mother told how she watched her toddler begin to stumble and walk with a gait. Then she noticed something different about her smile. She would later be told the dystrophy had affected her facial muscles and leg muscles.
“We went to our local doctor first, and then after doing tests and not finding anything we went to a doctor in Galveston,” she said. “Looking back, she really had little signs ever since birth. The weakness in her muscles, the off-balanced walk. Then she couldn’t draw her top lip up very well when she smiled, and I noticed how she couldn’t keep up with the other children when she played soccer.”
Jackson said physicians in Galveston told her immediately that her daughter had one of two types of muscular dystrophy and arranged genetic testing to determine the exact type. She still travels to Texas Children’s Hospital for regular check-ups.
“We were told the disease could just show up or it could be hereditary,” she said. “If she decides to have children, they will have a 50 percent chance of having it also.”
The disease may have taken Jackson’s mobility, but it has not taken her motivation. At 16, being confined to a wheelchair really does not dampen her upbeat spirit. With a plan in mind for her life, she said it is her love for animals that has her determined to become a veterinarian — maybe because animals love so freely and never recognize human shortcomings or disabilities, she said. With a positive attitude and a strong independent spirit, Jackson talked about her prom experience and how it really was not a big deal, but it was “kind of cool.”
“The prom was fun,” she said. “We didn’t do a lot of dancing. We watched a lot, but we got out there a little bit. It was really my first formal dance, and I figured why not, let’s go, and we went and had a good time.”
Hill, a LHS senior, suffers from spinal stenosis, and said he can understand a little bit of the discomfort Jackson goes through each day. He said he plans on starting Stephen F. Austin State University in the fall and wants to become a physical therapist. Jackson also plans on attending SFA when she graduates next year.

“I want to major in biology because of my love for animals,” she said. “I would love to specialize in certain groups or kinds, like, I really like wolves and penguins. Penguins are so cute, and I just want to hug them.”
Her love for animals goes back to her childhood, her mother said. Jackson has always had a pet and enjoyed taking care of many types of animals, including lizards, dogs and even rats.
She wants a ball python, for when she moves out, both parents said, smiling over how determined their daughter is.
“I think she has wanted to be an animal scientist since she was about 5,” her mom said. “She even won best impersonation of an animal in kindergarten.”
Jackson said she keeps her circle of friends small because she is not a people person. While she doesn’t shy away from being social at school, she said she is selective in choosing her friends. Jackson said life on the LHS campus has been “fine,” but maneuvering around could be made a little easier for someone who goes to class every day in a wheelchair.
“It’s OK. I am pretty capable of wheeling myself around without any help,” she said. “The only thing is, the high school has a really crappy elevator that breaks down a lot and that makes it difficult, but I manage. I get to get out of class early in order to make it to my next class, so that’s not bad.”
Wearing a T-shirt that read, “Make a muscle, make a difference,” Jackson sat in the spring sunshine last week as her parents cooked hamburgers at a local business to help raise funds for a Relay For Life team.

Jackson and Hill

Shelby Jackson and long-time friend Kelly Hill pose outside a Lufkin business last week as family members prepare and sell hamburger plates for Relay for Life.

Though Jackson’s parents are positive about their daughter’s future, they said discovering the disease that would immobilize her for life was heartbreaking. They agreed their determined young daughter doesn’t look at life as being unable to do the things she wants. In a mother/daughter conversation, she said Jackson told her one day that she really feels blessed.
“We were sitting in front of the school at Lufkin Middle School and she just started talking,” her mom said. “Shelby told me she felt special because she has dystrophy. I was kind of shocked and I asked her why, and she said it was so exciting to think that God has chosen her to have such a rare type of dystrophy and because of that she can help other people.”
Facioscapulohumeral Muscular Dystrophy is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are some of the most affected. Weakness attacks the facial muscles first and is usually noticed in early childhood. The disease can also affect hearing and vision.
The disease is associated with a genetic flaw that leads to a shorter than usual segment of a specific DNA chromosome. The cause for the genetic flaw has not been discovered, according to
The Jacksons have modified their home in order to make everything accessible for their daughter, and at this point they say she is “pretty low maintenance” — and that is just the way the independent teen wants to keep it.
Jackson said she has questioned in the past why her daughter had to suffer such a debilitating disease, but has since realized that their family is truly blessed.
“We have had moments of mourning for things that she can’t do, but she has never questioned or asked, ‘Why me?’” Jackson said. “I totally believe it’s because we have always taught her that God has a plan for everything, and this too is part of His plan.” By RHONDA OAKS/The Lufkin News

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