“I knew something was not normal with my baby 12 weeks into my pregnancy,” said Wendy, Anely’s mother.
Wendy didn’t know exactly what was wrong with her baby until she was 7 months pregnant. She was told her daughter has Osteogenesis Imperfecta (brittle bone disease). According to the Cleveland Clinic Health Library, Osteogenesis imperfecta (OI), is a connective tissue disease that makes your bones fragile and easily broken. It causes your body to make less collagen.
When Anely Olacio was born, she had countless fractures all over her body and her skull was not fully formed. Wendy had friends and family who had recommended she get care at El Paso Children’s Hospital (EPCH). There are different types of OI, so initially the family believed she may outgrow the disease.
“People told us El Paso Children’s Hospital had the best pediatric doctors in El Paso,” said Wendy. “We immediately found an orthopedic surgeon and a few other specialists at El Paso Children’s. All the doctors were focused on improving Anel’s quality of life.”
As Anely grew, the bone on her head grew and she began to grow. She spent the first few years in and out of the hospital. Sometimes staying days in the hospital receiving infusions to help her get stronger. Doctors still weren’t sure if Anely would ever walk.
Then, when Anely was two, the doctors diagnosed her with Hydrocephalus, which is the buildup of fluid in ventricles deep within the brain that puts pressure on the brain.
“With the fluid on her brain she needed another surgery,” said Wendy. “This disease meant she needed to be on a ventilator all the time. Where every Anely goes, the whole ventilator goes.”
Now Anely has three specialists that coordinate her care and health. Anely and her family spent a lot of time at appointments and with the doctors. When she was first diagnosed with Hydrocephalus, she spent a week at EPCH almost every month.
“All of Anely’s doctors are very attentive,” Wendy said. “The doctors, nurses, therapists, respiratory and everyone we see is very attentive and provided for her very well. I have trust in the hospital and all the workers.”
Today, Anely enjoys a good quality of life, and her mother says she is very happy. She doesn’t typically spend days in the hospital now, she still undergoes treatments every six months and to the doctor’s awe, she can walk with assistance from a walker.
