Finding Health and a Road to Belonging

In the Face of Adversity

Shortly after James was born in a small town in Uganda, his mother noticed what appeared to be a small pimple on his cheek. They had no reason to be concerned; they focused instead on bringing a new child into the world. However, it quickly became apparent that something was terribly wrong. The pimple grew and grew, developing into a prominent, disfiguring lesion on the lower right side of his jaw. By the time James was 5 years old, he had several biopsies taken, which confirmed he had a plexiform neurofibroma; in lay terms, a slow-growing benign tumor that often forms around multiple nerve bundles. Besides disfigurement, this means occasional pain and impairment of his jaw function.

At 8, James was diagnosed with a progressively enlarging right facial mass, with larger concerns that it might be a symptom of a genetic disorder called Neurofibromatosis type 1 or NF1. A genetic disorder would significantly change his future treatment plan, but without access to high-end care, it’s difficult to make any definite diagnosis.

While the mass on his face grew, James suffered not only physically from the pain from the neurofibroma, but also emotional trauma. His mother passed away unexpectedly, and he and his siblings were left under the care of their grandparents. He suffered from isolation at school, as teachers feared he was contagious and barred him from attending. It was only through a local charity, Bloom Child Support, who were raising funds for James ’ family, that the teachers became educated about the nature of the condition. He was able to return to school, but he was mercilessly bullied by his peers. Bullying caused James to withdraw from playing and even speaking until very recently.

JHI On the Case

Once JHI received the case, our Medical Advisory Board reviewed the available information.

The medical records were minimal, and a more comprehensive in-person assessment would be needed to create a strong treatment plan. Still, we shared his case with a hospital in the U.S. that we had worked with in the past. Despite months of back and forth, his case was eventually denied. This was due in large part to the lack of medical information and the worry about the potential NF1 diagnosis, which would dramatically change the length and nature of care.

​Our Medical Advisory Board is often more like medical detectives using limited clues to create a clearer picture of the medical reality for a child halfway around the world. We are working with many different care centers with different levels of capabilities, and different systems of keeping records. Our Board is not in the room with the patient and is often piecing together the medical narrative from scans and notes. They are still able to put together strong medical cases for us to bring to our partners; however, sometimes more is needed for the case to be taken.

This meant JHI had to regroup. After James' case was rejected from the U.S. hospital, we began reaching out to other hospitals in Europe, hoping to make a connection. Fortunately, we were introduced to a physician in India through our connections at Boston Children’s Hospital. The Indian physician has four decades of expertise in plastic and reconstructive surgery, as well as experience with cases such as James’s. While we are still in the planning and logistical phases for James’s treatment journey, we are very optimistic about his future. We are certain JHI will continue to offer him hope and relief in the coming months.​

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