It’s not the size of the child in this life that matters; it’s the size of the life in the child. Meet Diana Diaz Lopez, and you will understand.
Almost exactly one year ago today, now 10-year-old Patrick Sharrock and his parents from Rossville, GA, were on their way to Disney World while the crew of ABC’s “Extreme Makeover: Home Edition and thousands of local volunteers constructed their dream home. However, amidst the camera crews and local news reporters, a new home wasn’t the only thing that rose to the attention of all tuning in. Patrick, whose out-going and fun-loving spirit stole the hearts of all who watched the reality show, was born with osteogenesis imperfecta (OI), also known as brittle bone disease. The Sharrocks’ new home was built specifically to accommodate Patrick’s needs, including stronger floors and rounded corners.
Just like Patrick, Diana Diaz Lopez bears the weight of a dangerously fragile skeleton and, at the age of four, has had more broken bones in her life than most children her age have baby dolls. Just like Patrick, Diana weighs a significant amount lighter than the typically developing children her age. Also just like Patrick, Diana possesses a spirit as strong as the beams holding up the Sharrocks’ new home and a mind as bright as her shiny wheelchair.
When her mother Gladis was five months pregnant with Diana, the doctors told her that her baby girl would be born with complications, but they didn’t have a diagnosis. Once she was born, they diagnosed her with OI. Diana spent the first week of her life in the neonatal intensive care unit (NICU), and Gladis visited constantly. “I would go see her and just cry and cry for my ‘nena’, she said in Spanish, using a term of endearment to refer to her daughter. “When I took her home, I started taking care of her, but it was hard on me. I couldn’t bathe her [because her body had fractures], and I would cry. It gave me a pain in my heart. She was so delicate and small. Four years later, Diana weighs only 23 pounds, which is about 65 percent of the average weight of a typically developing four-year-old girl.
According to the Osteogenisis Imperfecta Foundation, OI is a genetic disorder caused by the body’s inability to produce collagen, which is the protein and main component of connective tissue in the body. Basically, it holds us all together. Therefore, it’s as easy to break a bone in someone like Diana or Patrick as it is to break a twig in half under one’s foot. People born with OI also tend to have muscle weakness, fatigue, curved bones and short stature.
“By the nature of her disability, a lot of things have been done for her because it has been necessary, said Janet Parks, Diana’s teacher at Siskin’s Early Learning Center-Downtown. Naturally, therefore, Diana became accustomed to letting others get things for her, feed her, and even speak for her. According to Janet, Diana would have rather gone without something than to speak up and ask for assistance. However, after two years of integrated therapy in the Center’s inclusive and engaging classroom environment, Diana’s communication and social skills have grown leaps and bounds.
“When she first came to the Center, she was so shy and would just point to things and not speak, explained Dunia Williams, the certified nursing assistant who has been working with Diana since she came to the Institute two years ago. “We’ve been working on independence, and now she tries to get things herself, and she will ask for what she needs. She’s an independent girl now.
You may have to lean in closely to hear the soft, high-pitched yet confident voice escaping from her tiny body, but in the minds of those at the center, Diana’s newfound ability to speak up for herself and express her needs couldn’t be any louder. For example, with two broken arms last year, Diana learned to maneuver her customized wheelchair throughout the hallways with ease, perhaps better than most of us do when behind the wheel of our car.
As the mother of a child with special needs, Gladis talks about her “nena and the experiences she has received at the Institute with a joy only a parent can know. “When Diana goes to school, she comes home happy, she said. “She starts talking about her friends. She will tell me things, and I’ll ask, ‘Where did you learn that?’ and she says, ‘School.’ I am very happy that she is at a place like Siskin [Children’s Institute]. They treat her well and teach her so much.
What Gladis might not realize, however, is how much her daughter teaches everyone else. There is something special about Diana, and all those who come in contact with her can feel it. Perhaps it’s her dark braided pigtails lightheartedly dangling from the sides of her head; or maybe it’s the sparkle in her eyes seeping through from behind her glasses, or the sincere smile you earn from being her friend. Whatever it is, Diana’s determination and loving spirit will get her to where she wants to go in this life, despite any obstacle.
According to Diana, that place will be in a doctor’s office, dressed in a white coat, helping other people who are challenged with skeletal disorders. Just like her doctor has done for her.