Where It All Began
When I was ten years old I started having unexplained swelling in my cheek, what looked like black eyes and headaches. We went from doctor to doctor trying to find out what was wrong. Several doctors suspected a tumor of some sort, another temporal arteritis—which is a disease of the elderly— we went from physician to physician with no answers. A family friend who is a cardiologist had a hunch and contacted a colleague in San Francisco who finally zeroed in on a diagnosis; a facial AVM‑ arterial venous malformation. Knowing what was wrong was the first step in a very long and continuing journey.
An AVM is more commonly found in the brain or spine of an individual, but I was fortunate enough to have mine on the right side of my face instead. Though not cosmetically ideal, the placement of my AVM is essentially life or death: most AVMs placed in brains or spines are considered life-threatening, whereas mine is considered only debilitating. Nonetheless, treatment is a must for me: if it were to go untreated, my risk of stroke, losing vision, and hearing, is exponentially increased.
What we soon learned is that there are very few surgeons in the United States who are qualified or willing to treat a facial AVM in a child. No one in the state of Florida (where I live) was able to treat my condition which worsens with adolescence. After exhaustive research, we identified a pioneer in the field of vascular malformations and their treatment, but he was located in Denver, Colorado (nearly 2,000 miles from my home).
We made the arrangements and flew to Colorado the following summer. We consulted with the doctor and began a series of trips and surgeries to treat the AVM and to hopefully stop its growth. Over the course of the last 7 years, my family and I have made 15 trips to Colorado for treatment and incurred the incredible travel expenses to do so. I was fortunate that through family’s exhaustive efforts we were able to make these continuing trips for my care. I realized somewhere along this challenging and emotional journey that many children with conditions requiring travel would be unable to get necessary medical care because of the cost to get to specialists in other parts of the country or world. During my junior year of high school, I made the decision to try to help other children with rare conditions to get the care they need, and thus, Duckling’s Travel was formed.