Meet the Derksens. We met this amazing family through our social media channels, and they have become our patients and friends over this past year. We asked them to share their story for our Children’s Vision Month project, and they went above and beyond for us. Here is part one of their story in their own words.
We are Russell, Jenni, Faith, Jude and Benjamin (Benji). Our vision story began in May 2014, but we didn’t know it yet. Benji came into our world and was a sweet, easy newborn. Life was chaotic, but that was to be expected with three small children.
We began to notice that Benji never looked directly at us, but over our heads instead. He was happy and smiled a lot, so we thought perhaps he was looking for siblings in the chaos. It really hit us in late July 2014. Faith was almost 4, Jude was 17 months old and Benji was only 2 months old. As young parents, we were being adventurous and brought our tiny baby to a close friend’s wedding. While enjoying the wedding reception we noticed that Benji kept looking back and forth quickly. We wondered again if he was searching for something. This happened on and off for the next couple of days. When we realized that it was not going away, we set up an immediate appointment with our local pediatrician.
We are so thankful to live in a small town with incredible resources and friends like Dr. Michael From. Dr. From looked at what I had been describing, and diagnosed Benji with nystagmus. Nystagmus is an involuntary, repetitive and rapid movement of the eyes, hence Benji looking back and forth. Since nystagmus is often associated with other vision and medical diagnoses, Dr. From referred us to a Calgary pediatric ophthalmologist, Dr. Stephanie Dotchin. Again, we were thankful for quick help.
We saw Dr. Dotchin within days, and as soon as she looked in his eyes she said “albinism”. Albinism is characterized by a lack, or a lessened amount of pigment in a person’s body. This lack of melanin is visible in the hair, skin, and eyes. The iris is one of the pigmented parts of the eye, and when a person has albinism, they have less color in the iris or no color at all.
There is also a lack of pigment in the retina, a thin tissue at the back of the eye, causing it to not function properly and not send clear images to the brain. Additionally, visual information traveling through the optic nerves to the brain doesn’t follow the normal course in individuals with albinism. Consequently, people with albinism often have low vision, nystagmus and lazy eyes. They also tend to be very sensitive to light, and it can be quite painful for them to be out in the sun without sunglasses, or even in a room with fluorescent lighting. None of these issues can be corrected with medical intervention, however nystagmus often dampens over time until the patient reaches school age.
In a way, this diagnosis was a relief because there are other possible causes of nystagmus that are much more debilitating. Though still not what you dream for your baby, this diagnosis was manageable. However, we were sad to hear that he could be legally blind and may never drive. Dr. Dotchin was fantastic in being realistic and encouraging. We walked away from this first appointment encouraged about his future, determined to keep life as normal as possible for him, and eager to encourage him to view his albinism in a positive light.
Dr. Dotchin also pointed us in the direction of the NOAH (National Organization for Albinism and Hypopigmentation). We took our time becoming members since NOAH is mainly a US-based organization, but once we did connect we were thankful. Dr. Dotchin could not diagnose a type of albinism, but has pointed us in the direction of genetic counseling. She offered that he could have either ocular albinism or Type 2 oculocutaneous albinism purely by looking at him and our family history. Dr. Dotchin also referred us to the CNIB (Canadian National Institute for the Blind). This referral has been incredible. As a donation-funded organization, they have limitations in what they can provide, but they came to our home in Didsbury and assessed Benji, set us up with resources and booked occupational therapy appointments. They also walked us through some of his specific needs as a child with albinism. They also recommended high-quality sunglasses from an optometrist, and a specific frame that might suit his needs as a baby, sunscreen, and some devices to stimulate his vision.