Benji and Jenni Derksen's Story

Benji with cane.JPG

Jenni Derksen is the mother of three young, vibrant children. She and her husband Russell raise their six-year-old daughter Faith, and sons, four-year-old Jude and three-year-old Benji in rural Didsbury, Alta. For most of their parenting lives, Jenni and Russell had no inkling that their experience would be any different from the rest. But, at the mere age of three-months old Benji was diagnosed with albinism - a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes. Albinism is associated with several vision-related medical conditions including photophobia, nystagmus, and amblyopia.

When his parents began noticing that Benji struggled with making eye contact they didn't think much of it.

"At first you just think 'oh, he's just too little to focus'. But, then you realize no this is going on a little longer," says Jenni.

In 2014, the family was attending a friend's wedding when Jenni and Russell started to notice Benji's nystagmus – a condition that causes involuntary eye movement. They took him to a pediatrician where they were told that the doctor had only seen nystagmus in children with seizures, but under further evaluation, thought that Benji may be fully blind. The family was then sent off to pediatric ophthalmologist Dr. Stephanie Dotchin. After one quick look in Benji's eyes, Dr. Dotchin confirmed that he had albinism.

Jenni explains how they felt, "In comparing albinism to potential life-threatening conditions, we were very accepting. At the same time, it's still heartbreaking because having a baby you don't plan for him to have major struggles in life. We were accepting, but we were definitely heartbroken and worried. Is he going to ever ride a bike? Are they ever going to do the things that I did as a kid? So many questions."

After the diagnosis, Benji was referred to CNIB and NOAH (National Organization for Albinism and Hypopigmentation).

"We had a couple good resources like NOAH and hooking up with the CNIB was huge too," she says.

Once connected with CNIB, Benji started receiving services from the Children's Department in the Calgary office. Sandy Summers, who is the Program Lead for Early Intervention, set Benji up with a white cane, along with giving the family emotional support and tips on how to help Benji.

Jenni raves, "You wouldn't really know what to do if it wasn't for the CNIB. They taught us when he comes up to a curb he doesn't see if it's tall or short. He doesn’t know how high to step up so Sandy taught us to say big up, or big down, or little up, little down. The verbal prompts"

His siblings are also constantly providing support. While Benji's sister Faith is guiding him, and letting him know of curbs, Benji's brother Jude is always happy to share his baseball cap.

"It's cute," she says. "If we go out and Benji didn't bring his hat and Jude has a hat, he knows that Benji can't see if he's not wearing a hat so he'll give him his hat. They know the priorities for Benji are hats, glasses, sunscreen and they're a team to make that happen"

Jenni believes these experiences are creating a closer bond.

"It's taught my husband and I that we can do anything together and that just because someone is different that doesn't mean anything," she says. Benji has albinism but he's still Benji – a happy little three-year-old. It's grown our family closer if anything."