A new mom knew there was something different about her son from the moment he opened his eyes, but nothing could prepare her for the diagnosis to come.
In a video posted to TikTok as @jaylynn.jo, Jaylynn Johnson, a 24-year-old mom and nursing student from Indiana, recalled looking at her son, Atlas, in the weeks after he was born last March and "trying to convince myself there wasn't anything wrong."
"When my son was first born, we noticed he didn't really 'open' his eyes the first few days," Johnson told Newsweek. "When he was a few weeks old we noticed when we were close to windows he would not open his eyes, and when we weren't in brightly lit areas, he constantly scanned the room with his eyes."
Johnson has posted about Atlas on her TikTok ever since the day he was born. Those initial posts were what started her on the journey towards his eventual diagnosis. "When I first shared my son's birth, social media went wild over how unique and beautiful he was," Johnson said. "After sharing him and our life on social media, many individuals and families reached out pointing out some concerns I believe I was just in denial about initially."
Johnson sought a medical opinion and, after some initial tests, Atlas was diagnosed with Nystagmus, an involuntary eye movement condition often referred to as "dancing eyes."
Atlas then underwent genetic testing which confirmed he had Oculocutaneous Albinism Type 1, one of the 7 forms of oculocutaneous albinism on record. An inherited disorder attributed to a lack of melanin, this type of Albinism can lead to an individual having white hair, excessively pale skin and light-colored eyes.
It can also result in vision problems like nystagmus and acuity issues, while the skin is more susceptible to sun burn. "We know Atlas isn't blind. That has been confirmed by his visual tests completed. But, it's very likely that Atlas will have some visual impairments, and or could be considered legally blind," Johnson said. "Unfortunately we will not know the actual state of Atlas's vision until he is older and able to explain what he can and can't see."
It's estimated that one in 18,000 to 20,0000 people in the U.S. have some type of albinism, according to the National Organization for Albinism and Hypopigmentation.
Johnson admits she initially struggled to come to terms with Atlas's condition. "When I first received my son's diagnosis I was initially very scared, more so for the unknowns that lied ahead. No parent wants to see their child struggle, or be casted out for their differences," she said.
However, she's been able to draw strength from seeing her son flourish. "I'd be lying if I said I'm not still scared of the unknowns, but even now, Atlas has shown how fierce he is despite the challenges he's already faced," Johnson said. "He's so young, but already excels. He makes me so proud, and I'm so grateful that God blessed us with him."
She's also taken heart from the response on TikTok. "Making videos was very good for my mental health, especially postpartum. It gave me something else to focus on then the stress and uncertainty of not knowing what was going on at the time with Atlas," Johnson said.
"I didn't realize at the time the community I'd built from it. I've met other parents with children with rare genetic disorders, others with children with albinism, etc. It's become a center of hope knowing I'm not the only one going through this."
It means that whatever challenges come next, Johnson, Atlas and all the rest of her friends and family both in-person and online are ready to face them together.