Beth (Betty Boop)
Beth Ann Spratford 28 years old
July 13, 1976 – October 28, 2004
Once upon a time, there was a little girl named Beth
who was born to a family who was unable to care for her or her brother. The children were removed from their mother’s home, but no one in their natural family was allowed to adopt them because all the eligible relatives were at risk for Huntington’s disease, and the courts didn’t want to risk them losing another set of parents. The children were eventually adopted by my husband and myself. We had been informed of the presence of the HD gene in the children’s biological family, but had hopes that before HD would strike—presumably in 30-50 years or so, a cure might be found. We had not been told that there was such a thing as juvenile Huntington’s disease.
By the time Beth turned ten or so, it was obvious that she was having some problems. We thought perhaps she had a learning disability of some sort. Her school work began to suffer, and as she got older, she began having some other issues that led us to see a psychologist. We eventually ended up seeing a neurosurgeon who found some abnormalities, but refused to diagnose Huntington’s disease because she was “too young”. Since we didn’t know HD could strike children, we carried on the best we could. When her gait and her coordination started to be affected, we took her to the genetics clinic at Indiana University, where she was diagnosed with JHD. We all cried a lot that day. Beth cried, not because she had HD, but because they told her she would never be able to drive. She said she wanted to stay in school and do the best she could. Even though she didn’t really have any mental handicaps, she was placed in special education classes so that she could get the attention she needed. She came to love her teachers and fellow students in those classes.
Beth decided that after high school, she would go to live in a nursing facility. That was her one little bid for independence. She would never go off to college, or have an apartment of her own, but at least she could have a room away from home and new friends. We found a facility with a unit for Huntington’s patients. Beth made quite a few friends there, since she wasn’t the only one there with JHD. Unfortunately, the state of Indiana closed the home for various reasons, and Beth had to come back home for a while. We enjoyed having her home, but it gradually became apparent that we weren’t equipped to care for her. She also felt that she wanted to be out on her own again. We found another nursing facility that catered to young people with all kinds of disabilities. Beth found a niche there. While she was still able to do things, the nurses would let her help them with small tasks. She loved the attention, and grew to be loved by all the staff. They named her Henny Penny, because she chattered like a chicken all day long. Unfortunately, this stage didn’t last. It wasn’t long before she could no longer talk, but she still had her movies and her cd’s, so she was still pretty happy.
We were able to take her out to eat (the girl LOVED food!) and bring her home for visits for quite a while, but HD is a relentless mistress, and eventually Beth lost the ability to walk, even with her pvc supporter. Her chorea worsened until she was in pain much of the time. Gradually, she was able to eat less and less solid food. She was determined not to have a feeding tube, and, since she was old enough to decide for herself, we respected her wishes. It was hard to watch her having to be fed liquefied forms of the foods she always loved so much. It was hard to watch her stiffen and cry out when the chorea became too much. Sometimes, as parents, we feel it’s harder on us to watch our child suffer, but I know that isn’t the truth. Yes, it was hard on us, but the one who suffered the most was Beth.
Beth died when she was twenty-eight, after a battle with pneumonia. She left a big hole in our family. We miss her every day. Her brother, David, hasn’t been tested, and doesn’t intend to be. So far, he doesn’t show any physical signs of HD. He’s thirty-eight, so there are still a lot of years for him to be anxious.
My JHD angel is dancing in heaven, with her idol, Elvis Presley. That girl loved to listen to Elvis! If there’s a river in heaven, I’m sure she’s probably in a canoe paddling peacefully downstream.
Thanks for listening. It would have made her happy to know that maybe her story might help someone else.
She loved to sing, and was in her high school choir for four years, even though, eventually, other choir members had to help her up on to the stage. She loved the whole spectacle—getting her hair done, putting on the make-up and costumes, hearing the applause of the audience.
with her Mom
Other Things Beth loved: Anything Sparkly, The Beach, Getting Soaked In Waves, Her Guinea Pig Named Daisy, Girl Scouts, Camping, Singing Around the Campfire With Her Troop, Elvis Presley and All His Songs, swimming, Music, Food.
Through all that suffering, though, I don’t think I can ever remember her once feeling sorry for herself or complaining—except for that first day of diagnosis when she heard she would never drive. I can’t even imagine going through what she went through without complaining or being angry, but she somehow managed to do just that.
She also loved her Girl Scout troop. Beth was the best Girl Scout ever! She loved going to camporees and other events. She loved canoeing and cooking over a fire. She especially loved Camp Gallahue, where she would wander the hills and forest paths. She managed to stay in scouts through her last year in high school. Her fellow troop members were always kind, and would help her when things started to get too hard for her. She was so proud when she earned her Silver Award.
One of the memories I have of her is a silly one. She used to have Miss Universe pageants for her Barbies. She’d get them all dressed up in their “evening wear”, and have the Ken dolls escort them down the runway she made in her bedroom.
Beth’s Mom Maria, Dad, Grandpa, Sisters Merry and Carrie, and brother David.