A girl whose bones used to break every two months was awarded for her courage in successfully battling her disease during a stem cell research conference at the Vatican.
“It feels amazing to win an award like this,” said Elizabeth Lobato, who was given the Pontifical Hero Award April 11 at the Second International Adult Stem Cell Conference in Vatican City.
“I heard I was the first to get this award from Rome and that’s awesome,” said the 14-year-old in an interview with CNA.
Elizabeth was diagnosed with osteogenesis imperfecta, commonly known as brittle bone disease, when she was just 10 months old. People affected by illness – which is caused by a genetic defect – often suffer from muscle weakness, hearing loss, loose joints, curved bones, scoliosis, brittle teeth and short stature.
But the teenager has grown over 13 inches since she began the adult stem cell treatment that involves her receiving bone marrow-derived stem cells from her father.
The teenager, still small for her age and currently in a wheelchair, is in Rome with her parents attending a conference promoting adult stem cell research.
The conference began April 11 at the Vatican’s New Synod Hall under the co-sponsorship of the Pontifical Council for Culture and the New York City-based Stem for Life Foundation.
The first gathering was held back in Nov. 2011, but as the group of physicians, philanthropists and patients assembled in the Vatican hall today, the sense of excitement was palpable.
“Since then it seems the entire world has awakened to a simple reality that adult stem cell therapies have the potential to usher in a new era of health and healing,” said Doctor Robin Smith, chairman and president of the Stem for Life Foundation.
“Adult stem cell therapies hold the promise to vanish countless diseases and dangerous medical conditions, to turn the tide of human suffering, to transform modern-day health care from one that focuses on managing symptoms to one that develops cures,” she said.
Smith added that in the past 17 months there have been thousands of news stories about “breakthrough treatments using adult stem cell research.”
“People have discovered that there already are replacement bladders, tracheas, and skin in a lab,” she explained.
“There are fortunate individuals who have received these precious replacements for organs by participating in clinical trials.”
Elizabeth’s mother called her “a fighter since the moment she was born.”
“I don’t know if I can find the right words to express seeing your child ill from birth and not being able to do the things children her age can do and should be able to do,” said Mary Lobato.
“Now she can spend the day with her friends without us being there, and she spent a week out of town without us. So it’s nice to see her progressing as it should be.”
Terry Lobato, Elizabeth’s father, also underscored that the family is against stem cell research performed using embryos.
“Our faith is very strong, my wife and I were both raised as Catholics and we both believe in God, so that’s why we would never go to embryonic,” he explained.
“As her parents we would do anything for her, we would give our life for our daughter, but we couldn’t ask that of anyone else,” he remarked.
Reflecting on some of the sacrifices involved in caring for his daughter, Terry Lobato said he was “the fortunate one” to be able to give Elizabeth his stem cells, adding that “it is working and she is growing.”
Before finishing the interview, Elizabeth offered some advice to other children suffering with the same disease.
“I would tell them to just never give up, that there is always something, ” she said, with a smile on her face.