Strength and hope: Support Kids with Brittle Bones

Dear Community,

For the Osteogenesis Imperfecta Foundation, joining GlobalGiving has been a crucial step in seeking the support we need to expand the reach of the work we've accomplished over the past 25 years in this country. This will allow us to help more children, extend our brigades to more provinces, and raise greater awareness of Osteogenesis Imperfecta to ensure proper inclusion for those living with this condition.

Our Work in Numbers

As this is our first report, we want to share some of the numbers behind our work.

Currently, we have 81 active patients who receive treatment every six months. This treatment, using Zoledronic Acid, helps increase bone density, thereby reducing the risk patients face due to the extreme bone fragility caused by Osteogenesis Imperfecta. Additionally, it lessens chronic pain and, for those requiring corrective surgeries, helps prevent pins from migrating outside the bone. This treatment significantly improves our patients' quality of life.

Patients are referred to us by medical centers, government or private doctors, or individuals who have heard about our Foundation. When they contact us, we inform them that our Foundation exclusively serves patients with Osteogenesis Imperfecta aged 0 to 15 years for initial intake. (We do have some patients over 20 years old, but the maximum age for first-time registration is 15.) Before registering them as Foundation patients, our volunteer FEOI neonatologist pediatrician must confirm the diagnosis and authorize treatment.

Treatments are administered during medical sessions organized by the Foundation in the following cities: Quito, Latacunga, Santo Domingo de Los Tsáchilas, Guayaquil, Chone, Machala, and Loja. Patients are assigned to the location closest to their residence. This approach aims to prevent long journeys and potential fractures due to their bone fragility.

Our Impact and Ongoing Commitment

Over the years, we've delivered approximately 4,000 treatments to 139 children. The work we do requires a long-term commitment, as it's a recurring treatment essential for maintaining increased bone density over time.

Organizing each medical session is a meticulous, collaborative, and human-centered process that involves multiple steps:

1. Active Monitoring of Children and Youth with OI Across the Country: We assess each child's medical needs and determine who should receive treatment in the upcoming session. This involves considering any impediments like recent surgeries (within the last 6 months), other treatments that might conflict with Zoledronic Acid, or ongoing viral or bacterial infections.
2. Coordination with Hospitals and Medical Centers: We coordinate with facilities in the cities where medical sessions are held. This includes scheduling the day and time, arranging for supplies and medication, and distributing appointments to patients.
3. Treatment Administration: The medication is administered intravenously to groups of 3 to 4 patients, typically in a 40-minute to one-hour process under medical observation.
4. Post-Treatment Follow-up: The Foundation maintains direct communication with families to answer any questions they may have and to coordinate other activities we undertake, such as distributing food packages or wheelchairs.

A Look Ahead

Over the past 25 years, we've witnessed a significant increase in our patients' bone density, which has greatly contributed to a considerable decrease in fracture frequency. We want to reach even more children. With just $240 annually, you can secure a full year of treatment for one more child.

We're counting on your support!