Logan is a happy, outgoing and smart seven year old. He is in the gifted and talented program at his school and will be starting second grade this year. Since the moment he met his first toy vehicle, he has loved cars, trucks and buses. He was also introduced to hockey about a year ago through a blind hockey event and has played ever since.
Zoe is a vibrant 5 year old girl who will be starting kindergarten this year. Any free moment she has she is either doing arts and crafts or trying to do anything her brother is doing. She also enjoys soccer and dance.
Logan and Zoe have a congenital retinal disorder known as Severe Early Childhood Onset Retinal Dystrophy (SECORD) caused by mutations in a gene known as RDH12. This condition affects both types of photoreceptors (rods and cones) so that central acuity, peripheral vision and night vision are all impaired. Fewer than 15 children per year are born with RDH12-associated SECORD in the United States.
When I asked Logan and Zoe’s parents how SECORD was impacting their family, they said:
This rare disease is what comes between my children and the world. It limits them. “Rare” has flipped our world upside down and forever changed us. We know our love is what keeps us going on the days that feel impossible. We never ever give up on our children, and we will never stop fighting for their well-being. All we want is for our children to not have to fight so hard to simply be.