By Tina Pandolfi McGovern
My 11-year-old son Jack faced down asthma and allergies all his life, but in 2006 he was about to embark on another and much more costly fight — the battle to save his eyesight. One day Jack said, “Mommy, I have a black spot in my eye.” Jack is the baby in our family, the fourth after three girls, so my inclination was not to worry. I made an appointment with a pediatric eye doctor we knew and actually rescheduled the appointment not once, but twice due to sports conflicts.
On a Friday at 5 pm, I took him to a retinal specialist in downtown San Francisco named Dr. Mike Juniper. The consultation confirmed that Jack had Coats Disease. Like most parents, I had never heard of Coats Disease. I proceeded to stay up all that night searching the internet for someone who could cure Jack. I landed on a doctor whose specialty was cryo, or freezing of the eye. After my frantic pleading the doctor at UCLA Medical Center agreed to see us. I was in such a panic, I was ready to accept the doctor’s recommendation that you must “kill the beast”—my son’s Coats Disease.
Fortunately, my husband was thinking more clearly, and suggested we seek a second opinion. Off to Stanford we went. The doctor there took a more measured approach, and knew of Dr. Juniper. During the first months, these two doctors consulted about Jack’s case, so I felt assured we were getting the best care. Nevertheless, I continued my search for the “cure doctor.” After six months I finally discovered a doctor in New York who was conducting a clinical trial for Coats patients ages 18 and up. I called and asked if he would agree to see Jack. He said yes, but inquired why I wanted to see him in New York when the best specialist in the country was San Francisco. “Who is that?” I asked, and he named our own Dr. Jumper, who had been patiently treating Jack all this time. I had to accept that there was no cure — only excellent consistent care.
Jack endured three surgeries, one in the hospital and two laser surgeries, as well as umpteen painful tests to control the leaking blood vessels. Every single time he was undergoing a procedure. I wished with all my heart that it was me who had Coates and not Jack; that he would not have to endure these treatments. Every mother wants to spare her child worry and pain.
But Jack adjusted to his disease. Today he is a happy, healthy 16-year-old boy. who excels in school and sports. He has hopes and dreams for his future. He continues to be under Dr. Jumper’s care, and is checked every three months to determine if anything is growing/leaking.
I try not to let myself think about “what could happen” or “what will we do if”. Instead, I focus on the day-to-day living of a beautiful young man who speaks to others about his condition, inspires younger children with his courage, and is a hero to our family and friends. I take strength from other parents and patients, young and not so young alike, who are on the same path as we are. I am dedicating my life’s work to eradicating Coats Disease for Jack and for all the others who endure it. I thank all of you for trusting me with your personal stories through calls and writing.
I promised Jack back in 2006 that I would never stop working until we restored his eyesight; that I would do the heavy lifting of arranging for his care and researching a cure while he kept on being a boy and enjoying his life. With your help, I am keeping my pledge.