“Do you think he would rather wear cheese or throw cheese?”
This question from Finn, our nine-year old son, marked the end of our visit to Madison - Wisconsin. It was the last of three trips to the University of Wisconsin where he was taking part in a clinical drug trial. Standing in the airport gift shop, Finn was trying to decide on a gift for his seven-year old brother Oscar and had narrowed the choices down to either a “cheese head” hat or a “cheese” football. As Finn debated the pros and cons of each souvenir it struck me that this decision was more difficult for Finn to make than it had been for him (and us) to agree to take part in the dopamine drug trial. He finally selected the football and we were the last passengers to board the plane for Canada.
Finn was born with oculocutaneous albinism, OCA1. When he was three-months old we were given the hopeless diagnosis; our son was legally blind. There was nothing we could do for his vision, and to “...come back again in five years.” Since that diagnosis, together with our fantastic pediatric ophthalmologist, Dr. Terri Young, we did everything that could be done to help improve his vision including patching and strabismus surgery, but these interventions did not solve all his vision problems. Fast forward to April 2013: we learned about Dr. Struck’s clinical drug trial at UW Health to study the effects of dopamine replacement on the eyesight of people with OCA1. After some background research and speaking with Finn’s ophthalmologist, we presented Finn with all the facts. It would mean three trips to Madison, some missed school and taking pills three times per day for three months. We explained that he might also experience some side effects like an upset stomach and bad dreams. Finally, after going through it all, we had to tell him there was a chance that the drug would not have any effect on his vision. Tough stuff for a nine-year old to comprehend, but Finn is a competitive soccer player and never leaves anything on the field. He decided it was worth the effort regardless of the outcome.
Our first visit with Dr. Struck and his team was in May 2013. The clinical research coordinator, Angie Wealti, greeted us warmly in the lobby of the UW Heath Eye Clinic. Understandably both Finn and I were nervous but Dr. Struck was engaging and friendly. He and Finn chatted about Premier League soccer and Finn’s favorite players all the while answering some general eye and health related questions.
Over the next six hours, with a quick break for a snack around lunchtime, Finn participated in five vision tests. He was asked to arrange colors in a spectrum, read eye charts and look at black and white dots and patterns on a television screen. According to Finn the electroretinogram was the most exciting test. It involved sitting in a dark room for forty-five minutes and then looking at red dots and white flashes on a monitor.
Angie escorted us from one test to the next, along the way introducing us to all the doctors, orthoptists and ophthalmic technicians who work on this project. Everyone was friendly, caring and helpful and took the time to explain each test to Finn directly, telling him why they needed to do it and what it measured. Finn’s natural curiosity took over and by the end of the first visit he thought he might give a short presentation to his class about his experiences with the clinical trial.
The second visit was three months later, after Finn had been on the prescribed drug protocol for Levodopa/Carbidopa. Identical to the first set of tests, Finn now knew what to expect and was more relaxed and very curious about the result of each test.
Over the course of the three months that Finn took the pills, he only experienced a tummy ache one morning after taking the pill on an empty stomach. The most difficult part of the whole process was remembering to take the pills after each meal every day. We did forget a couple of times but after the first month it became a habit. The final visit with Dr. Struck and his team took just two hours and we were done before lunch. As usual the visit was well-organized and seamless with almost no waiting time between each test.
Participation in Dr. Struck’s clinical drug trial was a positive learning experience for Finn and our family. He learned about OCA1 from a different perspective. Undergoing the tests and speaking directly with the doctors sparked his interest in learning everything he could about his condition and then taking ownership of that knowledge.
A year later, Finn looks upon his participation in the drug trial as a positive and constructive experience, one where he was able to do something proactive to help himself. Back at school he now approaches his “differences” from a confident point of view. He has learned to be an effective advocate for himself regarding his low vision. Most importantly, on our last flight home from Madison while gripping the “cheese” football, he told me that even if no improvement in his vision is detected, he felt that he has “helped science” and that maybe his contribution “...could help other kids in the future, but we won’t know unless we try these kinds of things Mom.”
This post was contributed by Roben Stikeman Boyle, a VOC Family Network Member and mother of a participant in Dr. Struck's Dopamine Replacement Clinical Trial. Thank you, Roben, for sharing your family's story with us.