The parents of a baby boy born with a full mop of snow-white hair dealt with a crushing blow when their 3-month-old son developed a vision disability. However, rather than be saddened by the situation, they channeled their energy toward turning his story into an empowering children’s book.
A few months later, the diagnosis of a vision disorder rocked his parents to the core.
“We had spotted nystagmus [involuntary rhythmic eye movements] from around 6 weeks, but we thought he was short-sighted and struggling to focus,” Gemma told The Epoch Times. “Our wonderful health visitor got us seen within a few days, but as Archie was so young, we were asked to come back when he was 3 months old.”
During this time period, Archie’s anxious parents tried to google every possible outcome, but were confident that his condition would be fixed with the use of glasses.
“We had even decided on nice black frames, like the older brother from the film ”Stuart Little!“ How cute would he look?” Gemma said.
Unfortunately, the doctor’s visit did not go as they hoped. Archie was diagnosed with a condition called ocular albinism (OA). This meant that the pigmentation of his iris had not developed properly, causing vision problems, nystagmus, and increased light sensitivity, Gemma explained.
“My husband and I sat in complete silence to be told they felt it was a genetic condition, carried by the mother,” said Gemma. “He was visually disabled, he will never drive, and will need help throughout his life. I had to pass my baby to his daddy as I began trembling with shock.”
After receiving Archie’s diagnosis, Gemma became panicked.
“In the beginning, the idea that I passed on the gene broke my heart,” she explained. “I really felt a sense of responsibility, but since this, I have had many conversations with my husband and professionals who have helped me see sense.”
The Stones have made it their mission to understand as much about OA as possible, especially for their daughter, Lilly, who may be a carrier of the gene. To help channel their shattering news into advocacy, Gemma, an author, has turned Archie’s story into a bedtime tale for her own kids and others.
“I have such fond memories of snuggling down with my parents and grandparents as a child to hear tales of magic and adventures,” said Gemma, claiming she prefers “short but fabulous” stories for her own kids when evenings are busy. Thus she knew a “quick pick-me-up” book was ideal for Archie’s story.
Gemma invented a protagonist, a star named Herb, who one day notices that he is different. Worried and confused that his light begins to dim, with the help of his father, he learns just how bright he is capable of shining.
While the story was a new one in their household, it began to be read quite a few times. However, it wasn’t just limited to their four walls, as Archie’s two older siblings, Kai and Lily, shared it with their friends and grandparents.
Gemma said that, when the book is read to Archie by his siblings, he loves snuggling down with them. She added: “He loves to touch the pages, and giggles when his dad puts on voices for the characters.”
The book, which is currently sold on Amazon and at Barnes & Noble, is also being added to more websites, Gemma shared.
According to the mom of three, the book is aimed at shedding light on all of life’s differences, whether big or small. She also hopes that “Herb” could reach as many homes as possible and “bring a little sparkle along with him.”
While echoing Archie’s special story in her book, Gemma is also keen to dispel misconceptions about albinism, a spectrum disorder that affects people differently. “The stereotype around white hair and red eyes is not always the case,” she said.
Now 7 months old, Archie is a fun-loving baby with a penchant for classical music. His current favorite song, said his mom, is Edward Elgar’s “Nimrod” from the Enigma Variations.
“He is a cheeky little boy who loves his food!” Gemma shared about his personality. “He completely adores his family, especially his daddy and granddad.”
I loved Archie before I saw him, and although he may not be able to see me fully, I know he feels my love, which is all I could wish for.”
