A miracle baby who was born with the inability to grow bones has overcome the disease at 6 years old. Janelly Martinez-Amador of Antioch, Tennessee was born with hypophosphatasia, an extremely rare bone disorder which leads to loss of all bone mineralization during childhood.
Her parents, Salvador Martinez and Janet Amador, didn't know why Janelly experienced pain from their touch and upon taking her to the doctor learned of her inability to grow bones. What's shocked them is that they noticed that Janelly was unable to move her body and wasn't growing or gaining weight appropriate for her age. Even x-rays taken by doctors revealed that the child didn't have bones. Fortunately she has overcome this challenge with the help of medicine and has developed a favorite hobby: dancing.
According to the U.K.'s Daily Mail, Janelly didn't even have a ribcage when she was born making breathing difficult for her and having to rely on ventilators and tracheotomies. By the age of two her parents didn't know if she would survive since they didn't see any improvement until they enrolled her in a clinical study that treated nine toddlers with an enzyme called asfotase alfa, which helps bones grow.
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What worried her parents was that the other children in the study started to experience improvement, but Janelly still seemed to remain the same. The Tennessean interviewed Dr. Michael P. Whyte, a metabolic bone disease specialist with Washington University School of Medicine, who was also worried about the outcome. "We were very concerned when the therapy started that there was no mineral in her bones to target with enzymes," he explained.
Considering how severe Janelly's condition was, most patients die as babies and she was the smallest one in the study. Luckily, the treatment started working and after 18 months, her ribs started forming and she started having muscle movement! Now Janelly uses a wheelchair to get around and no longer needs to be on a ventilator, and is still smaller than kids her age, but continues growing. Janelly's favorite past time includes bopping and dancing to music and her parents hope that this spring they will be able to remove her from a tracheotomy tube which has kept her from speaking. Doctors couldn't help but be amazed by this miracle child who defied all odds and went from no bone to bones in a matter of years.
It's miracles like these that make me glad that medicine can help children such as Janelly. She was born with a slim chance to survive and managed to challenge that hardship and continues to get better every day. Hopefully everything goes as planned and she will soon be able to live life as normally as possible.
Image via The Tennessean
