Our Story

We are the parents of 4 wonderful children. We have fun together and we work hard. We enjoy the outdoors and traveling to new places. All seemed to be going well in our home, but in 2008, an odyssey began after an uninvited guest entered into our lives. Our destinations became hospitals and doctor’s appointments, not soccer games, soccer camps, theme parks or water parks. This odyssey has taken us physically and electronically to several specialists of the specialists in Amsterdam, Minnesota, San Diego, Phoenix, Atlanta, Indianapolis, and many of the large teaching hospitals around the world.  

Something was very wrong with our little boy and NOBODY could tell us what it was. Some healthcare professionals even said there was nothing wrong with him. His condition continued to deteriorate and we began scrambling to find answers. We were racing against time and an unknown opponent that was mysterious, cunning, baffling, and powerful.  Seth always was delayed with his speech, but gradually this worsened and then he developed coordination problems and would fall frequently.

In the Fall of 2008, Seth developed a nystagmus, an involuntary rapid movements in his right eye.  MRIs were ordered to rule out a tumor on his brain. When you as a parent are told that there is a possibility of a tumor on your child’s brain, all sorts of feelings go through your own brain. As we look back, sometimes we wish our opponent was something like a tumor. Why? Cancer is common, well funded, and well studied with treatment options available.   

One Sunday morning in 2009, Seth fell off a chair at the kitchen table. He hit his head so hard on the wood floor we thought he would loose consciousness. After this episode,  we went to a sporting goods store and bought him a helmet. He wore this helmet constantly for the next several months.   He fell and hurt himself so often that he required sutures. One night, he fell while trying to get out of bed. He was bleeding from his head and once again, he needed stitches.

We’ve experienced some dark days and nights during this journey. It was already dark and we didn’t think it could get darker, but this night was…”a night to remember.”   I’m a physician assistant (PA) and do not like to suture, give shots, or provide any health care to my children. I just want to be their dad. It was 2 AM and we were so financially burdened with medical bills that an ER visit was not an option. Becky held Seth in her arms and was trying to stop the bleeding. I did what was necessary and injected his beautiful face with medicine to anesthetize the wound. Seth was crying, no daddy, no daddy. I was crying, acutely because once again Seth was hurt and crying chronically because as a health care provider, I knew Seth had something terribly wrong. By this time, the entire family was awake. We all tried to console and comfort Seth but to no avail. We did what was required and held him down as I repaired the laceration on his face.  

It is difficult to describe the feelings I had that night. Our little boy had a mysterious illness that no one could identify. Our precious boy needed the laceration on his face repaired. Two problems that I wish I did not have to deal with.  

In 2010, after bouncing around from provider to provider, we were referred to child neurology and genetics and met Dr. Vinodh Narayanan, a physician who would drastically and permanently change our lives. Dr. Narayanan took on Seth’s case with detail, compassion, and innovation. We knew that we had finally found a provider that would help us navigate our diagnostic odyssey. Dr. Narayanan diagnosed Seth with Leigh syndrome, a severe and often fatal form of mitochondrial disease. He also diagnosed our oldest daughter with a milder form of Leigh syndrome.  Dr. Narayanan knew that we needed to dig deeper, so he entered our family in a genetic study at Translational Genomics Research Institute (TGen). This study used whole genome sequencing to look for mutations in genes that would explain the patient’s problem. Approximately 18 months later Dr. Narayanan and his colleagues at TGen identified a mutation in the MTFMT gene that was responsible for causing Leigh syndrome. 

As this odyssey unfolded, we were amazed how many healthcare providers and people in general knew nothing about mitochondrial disease (including ourselves). We were baffled that there are no effective treatments for mitochondrial disease that affects 1 in 5,000 people. Furthermore, we were stunned to learn how connected mitochondrial dysfunction is to other more common diseases.  

In 2012, we took our story to a different level and went public. Prior to this, our story was only known to our family and friends. The decision to tell our story to the public was simple: we realized that our journey could benefit others. There is a common bond that families share when they have a child with a rare disease. 

The Belnap Foundation for Mitochondrial Disease was inspired by our children and the courageous daily fight they have with this disease. Our foundation gives hope and direction to others who are on a similar journey.  Our desire is to raise money for research and increase awareness among the general population and to health care professionals.    

Sincerely,    

Newell and Rebecca Belnap