LUCIA TRAVEZ, ECUADOR

Face of a smiling woman with long brown hair, glasses and golden earrings. She also have a golden necklace and a green with white pattern top. Who are you and what is your connection to OI?

I am Lucía Trávez, and I live in Ecuador. My connection to OI is through my daughter, María Paula, who is 28 years old and has a degree in Education.

Your daughter Maria Paula was diagnosed with OI. How has this diagnosis changed your life?

OI entered my life when I was 5 months pregnant with my third daughter, María Paula, who was diagnosed with this condition in utero. This event significantly transformed my life and that of my family. I found myself facing a condition that was entirely unknown in our country and a healthcare system unprepared to meet the basic needs of my little daughter. This led me to seek information about OI and the medical treatments available for this rare disease outside of my country.

After finding what I had longed for, and thanks to the American Osteogenesis Imperfecta Foundation (OIF), we were able to attend one of their conferences in California. There, we met doctors from the Shriners Hospital in Montreal, Canada, who presented the results of their research on the use of Pamidronate for patients with OI and introduced the Fassier-Duval rods.

Through this, we managed to get María Paula to receive the medication in Ecuador, and after several months of my persistent email requests to the doctors at Shriners Hospital, we succeeded in having María Paula accepted as part of the research being conducted by Dr. Francis Glorieux and Dr. Francois Fassier at the hospital.

After 22 years of treatment, her bone density is now within normal parameters, allowing her to live a nearly independent life. The birth of María Paula and the situation of children and adolescents with the same condition as my daughter in Ecuador led me to create the Ecuadorian Foundation for Osteogenesis Imperfecta (FEOI), which has become my life’s purpose.

Unlike most other countries it is the OI-organization who provide the treatments for people with OI in Ecuador. For 24 years, you and the FEOI have treated over 130 patients. How was that possible?

FEOI (Fundacion Ecuatoriana de Osteogenesis Imperfecta) is a non-profit organization approved and established by the Ministry of Health in 2000. Our mission is to improve the quality of life for children and adolescents with OI from low-income families across the country who cannot access the necessary treatments to strengthen their bones and reduce fractures.

To fulfill our mission and goals, our medical team has been trained at the Shriners Hospital in Montreal in the fields of Pediatrics-Endocrinology, Traumatology, and Physical Therapy. Over our 24 years of work, we have treated a total of 139 direct patients and 556 indirect beneficiaries.

Currently, FEOI serves 81 direct patients and 334 indirect beneficiaries. Since its inception, our foundation has strived to provide excellent care to our patients, with the help of both permanent staff and volunteers from the different provinces where our patients reside, all of whom are committed to our cause.

What are your ongoing projects?

• Zoledronate treatment: Our most important work is the medical sessions held every six months, where we provide zoledronate treatment, which has significantly reduced the number of fractures and allowed our patients to attend school and enjoy a safer childhood.

• Corrective surgeries: We finance and organize 90 surgeries to correct deformities, prevent further fractures, and help our patients gain greater autonomy.

• Medical exams: These include X-rays, bone density scans, and annual blood tests. The results are sent to the Shriners Hospital in Montreal, Canada, where their medical team analyzes them and provides recommendations that are implemented in the following medical sessions.

• Wheelchair donations: We have facilitated the donation of 74 wheelchairs, tailored to improve the mobility and independence of our patients.

• Vitamin and food donations: We provide essential supplements and food to support their overall health and well-being.

Group picture of children's, some of them in wheelchairs.

The current situation for people with OI in Ecuador is quite critical. What are the reasons for this?

FEOI faces serious challenges in continuing to provide comprehensive medical treatment to our patients. The loss of sponsors in Ecuador and Europe, combined with the economic and political crisis in our country, has drastically reduced the resources we previously relied on annually.

Additionally, Ecuador is currently experiencing severe problems with hydroelectric plants due to a lack of rain, leading to power and water outages of more than 10 hours per day across the country. This has worsened the economic situation for all Ecuadorians, particularly the parents of our patients.

This entire situation has limited our ability to carry out self-management events, which are fundamental to our work. In order to continue our mission in favor of patients with OI in Ecuador, we share with you our projects, designed to meet the most urgent needs. These are outlined for your consideration in the chart below:

This project is aimed at 81 patients nationwide, in the provinces of Imbabura, Pichincha, Santo Domingo, Cotopaxi, Manabí, Los Ríos, Guayas, and Loja. It is administered intravenously every six months, following the Montreal medical protocol, and is carried out by qualified personnel. The project also includes vitamin supplementation and food assistance to improve the patients’ nutrition, helping us to increase bone density and reduce the frequent fractures our patients face.

With all that has been shared, and grateful for the generous opportunity OIFE has given us in this interview, we make an urgent appeal to people and companies in the global OI community to support us financially so that we can continue to move this vital project forward. Every contribution is a step towards a better future for our children and adolescents. Thank you very much!

People who are interested in helping can contact me directly on email lutravez@hotmail.com