Osteogenesis imperfecta, a rare inherited condition.
Highlights:
- Angelitos de Cristal was founded by five families who shared the diagnosis of osteogenesis imperfecta, and it aims to raise awareness and implement accessibility programs in Mexico.
- The foundation provides support programs, rehabilitation centers, emotional rehabilitation, collaborations with hospitals, surgical treatment options, and dental and ophthalmology services for patients with osteogenesis imperfecta.
- Angelitos de Cristal seeks to involve the medical, academic, and scientific community in advancing the understanding and treatment of the condition through clinical studies and education for healthcare professionals.
- The organization’s comprehensive approach addresses the physical and emotional aspects of individuals with osteogenesis imperfecta, emphasizing that determination and support can help overcome obstacles and that illness does not determine destiny.
Toñito has an extraordinary story. At a young age, he was diagnosed with osteogenesis imperfecta. This rare inherited condition affects collagen production and causes an increased risk of bone fractures, dental abnormalities, inability to walk, and short stature, among others. He was also diagnosed with brain impairments, to make his story even more challenging. Toñito’s parents received this heartbreaking news and the idea that he would not live for long. It was then that they decided to give him the best possible life. With the help of the NGO Angelitos de Cristal, Toñito has been able to go to school and receive therapy. Even years later, he still walks and has an unwavering determination, with an impressive sense of self-assurance. “His mother has transmitted that to him,” says Cristina Durán, CEO of Angelitos de Cristal.
His mother has transmitted that to him.
Cristina Durán
This NGO was born thanks to five families who coincided with the diagnosis of osteogenesis imperfecta. In fact, one of the girls for whom it was founded is currently studying Pedagogy and has become an essential spokesperson at her university to raise awareness and implement accessibility programs on campus. “We live in a country that is not entirely accessible,” explains Cristina.
We live in a country that is not entirely accessible.
Cristina Durán
At the beginning of the century, the founders of Angelitos de Cristal realized there was no protocol for osteogenesis imperfecta in Mexico. Therefore, the foundation supports making “the process as least disabling and as functional as possible.” They have incorporated support programs in treatment, created rehabilitation centers to provide physiotherapy and hydrotherapy for patients, provided emotional rehabilitation, collaborated with hospitals, and offered telescopic nails for surgical treatment, which amount to $58,000 pesos. They also have references for dental and ophthalmology services. They also carry out medication application campaigns so patients can travel to Mexico City with all the facilities to administer bisphosphonate on an outpatient basis.
“As a pioneering foundation,” they seek to involve the medical, academic, and scientific community in advancing the understanding and treatment of this condition. One of the paths is to carry out clinical studies and objectively measure their programs’ impact on people living with this condition. They also seek to approach first-contact doctors, pediatricians, gynecologists, and even nursing staff through education to train them and shorten the diagnostic odyssey, which is often a long and complex process. “Genetic studies are not conducted until there is suspicion of the disease,” explains Cristina. In fact, it happened that a nurse was the one who sought out Angelitos de Cristal to properly care for a newborn who was diagnosed with osteogenesis imperfecta. “A nurse spends more time in the nursery.”
For almost 20 years, Angelitos de Cristal has been a beacon of hope for people with osteogenesis imperfecta in Mexico. Yael, now 19 years old, is another success story participating in their programs. He often shares the challenges he faces, such as when he tries to perform simple tasks like withdrawing money from an ATM, as they are difficult for him due to being unable to reach the machines. However, his tenacity demonstrates that a person’s true essence lies in their spirit, not their physical appearance.
Illness does not determine destiny.
Cristina Durán
The comprehensive approach of Angelitos de Cristal encompasses both the physical and emotional aspects, providing those affected with an opportunity to live fully, demonstrating that “illness does not determine destiny” and that with determination and adequate support, any obstacle can be overcome.
