On May 21, 2010, Lukas Timothy Tallent was born. He was born with hypoxic-ischemic encephalopathy (HIE), intraventricular hemorrhage (IVH), and global diffuse brain injury. As a result, Lukas has since been diagnosed with cerebral palsy (CP) and cortical visual impairment (CVI).
Lukas spent the first six weeks of his life in the NICU. While he was there, his mom, dad and grandma spent many hours, watching him, holding him when we could, talking to him, and singing to him. One of the songs his mom sang to him, called “Kookaburra”, was from her own childhood, about an Australian bird whose call sounds like laughter. A line in the song is, “Laugh Kookaburra, laugh Kookaburra, gay your life must be”. Wanting to think of the laughter and happiness in Lukas’ future, she began singing, “Laugh Lukas bear, laugh Lukas bear, gay your life will be”. Eventually, Lukas’ dad began calling him Little Bear and it stuck.
Little Bear has made a tremendous amount of progress since his birth. He has gone from crying for hours every day and rarely smiling to smiling and laughing many times a day. He has gone from being tube fed to eating and drinking everything by mouth. He has gone from being a child whose eyes rarely focused on anything to a child who looks and responds to his favorite toys, and is even beginning to look at faces!
Of all the challenges Little Bear is faced with, CVI seems to be the simplest to overcome. This is not to say that it has been easy for us to learn about CVI or for Little Bear to use his vision, but that there are concrete steps you can take that do lead to measurable improvement. We only wish we had known about Little Bear’s CVI sooner.
We created this website in order to pass on what we have learned to as many people as possible. Every time we hear of a child with CVI who went undiagnosed for years, or meet a medical professional who knows nothing about CVI, we feel even more determined to raise awareness about this condition. In our experience, it is often you, the parents or caregivers, who fill the gap and become experts in CVI and advocates for your children. We hope that the information on this website will help you to do this.