When you have a headache, how much do you complain about it? Or about a toothache? How much would you complain if you had never talked or heard anything? Or could you complain at all, if you were losing your walking skills day by day at age 11?
Laura Rodriguez Lopez is not whining about any of these. She is holding on to life while she is holding on to her red wheelchair. Her hunching back is not a burden. She is pushing the wheelchair slowly in the small living room of their house in La Esperanza, teaching herself how to walk again. Although she started to use the wheelchair about a year ago, it already looks worn out.
Laura, 11, was born with knits dysplasia, a bone growth disorder that causes dwarfism "with other skeletal abnormalities and problems with vision and hearing." She has been suffering almost all the symptoms of this disease. She is shorter than her peers. Her spine has been compressing more day by day, causing a hunch on her back. Her sight is limited with myopia. She has never heard or talked.
Additionally, she has to endure the pain that her abnormally large joints cause. Her growing joints and compressed spine condemned her to the wheelchair. Due to limitations in her movements, she has been gaining weight lately, which also puts extra pressure on her joints, back and internal organs.
Help from a Neighbor
Her mother, Hanciel Rodriguez Lopez, 31, commented that Laura has never received physical therapy until their neighbor, Page Sieffert, started to visit Laura two or three times a week. Each session lasts 45 minutes to an hour, depending on how Laura feels that day.
About two moths ago, Sieffert, who is a Pilates instructor at Guiones Beach, started to give her massage and exercise with her voluntarily. "She couldn't push herself (when they first started). Two months ago, I was there with my hands literally lifting her up and down on her chair in order to strengthen her muscle." She added, "Progress is unbelievable. The improvement that has been shown is that she and her mother are very determined and dedicated to her progress."
Sieffert is not a physical therapist but she has developed a background in body and movement while dancing ballet, practicing Pilates and studying nursing. She explained "I am just utilizing the technique of Pilates to decompress her spine and therefore creating strength and length in her body. Curve, hump... gravity through time will start to make it worse. If there is no muscle mass there then there is nothing to resist gravity and therefore her spine will continue to compress making her walking near impossible."
Even though Sieffert has been doing her best to help Laura, she still thinks that the presence of an actual physical therapist would be much better for her.
Days at Home With Older Sister
Knits dysplasia keeps two sisters away from the school. While Laura can only go to school once a week after a 2-hour long bus ride with her mother to Nicoya, her 15-year-old sister Arlet dropped out of high school to be able to stay home and assist her sister.
In addition to that one weekday school trip, some Sundays she goes to the church, Laura spends all her time at home. "I had only seen her at a doorway once," said Page Sieffert. Arlet, who dropped out about a year ago, will start night classes in July. Arlet said, "I'm very excited to go back to school in July, even if it is at night."
As the disease progresses, Laura's needs increase day by day. Even though she receives some help from her neighbor, who is willing to help her as long as she can, Laura still needs diapers, physical therapy, a nutritionist, new tires for her wheelchair or a better, new wheelchair and a person to do day care for her.
Her mother, who makes her living by housekeeping, can't afford the expenses to support Laura. Laura's mother said that she has never received any government aid. "I always apply but they always tell me wait, wait and wait. I don't know how long."
Laura shows her mother, Hanciel Rodriguez Lopez, how she can stand up by herself now, a sign that shows how useful the treatment she gets from her neighbor.