A Delta mother has penned her debut children’s book as a way to help other kids learn more about the rare medical condition her daughter has while also raising funds to support research and resources to support others facing the same diagnosis.
Released last month, Life with Williams Syndrome: An Introduction to Williams Syndrome for Kids is the debut work by Tsawwassen resident Amy Miller (née Bonner), who was inspired to write the book after her daughter Olivia was diagnosed with Williams syndrome (WS) two years ago.
And as May is Williams Syndrome Awareness Month, Miller has set a lofty goal of selling 10,000 copies of the book, with all money raised this month donated to the Williams Syndrome Association in Canada and in the United States (based on the distribution of sales).
Olivia, who turns three this June, was diagnosed with the rare genetic disorder after missing some early developmental milestones, such as not smiling when she was expected to.
The diagnosis led to a lot of Googling by Miller, who found that information was hard to come by.
“I went on Amazon and I bought every book about Williams syndrome — there’s not that many, I think I bought three,” Miller said.
WS, which occurs on average in one out of every 10,000 births world-wide each year, is caused by a mutation that results in about 26 genes being missing from one copy of the seventh chromosome in a person’s DNA. The condition is characterized by medical issues including heart problems and cardiovascular disease, developmental delays and learning challenges. Those with WS are often highly verbal with very social personalities, and tend to show an affinity for music.
Miller said Olivia’s diagnosis brought on a period of grief akin to mourning the loss of the future that she and her husband Logan had envisioned for their daughter.
“Our expectations for Olivia were the same as everybody’s expectations when you have a child: they’re going to have a normal life and grow up and leave home when they’re 18 and go to university, stuff like that. So it was kind of scary to think that Olivia’s going to be living with us forever and then we’re going to have to figure out where she’s going to live and who’s going to support her when she’s older and we’re older and we can’t support her anymore,” Miller said.
“I think that’s where the inspiration for this book came from, because there’s not a lot of resources out there.”
Miller says she has learned a lot over the past two years, both in terms of understanding Olivia’s condition and the issues to look out for moving forward, but also the importance of being patient and letting go of those earlier expectations.
Olivia, now on the verge of turning three, is cruising around with the aid of a walker and ankle braces, can repeat almost anything said to her, count to 20, recite her ABC’s and sing lots of songs. She even has a few single-word instructions down pat — things like hi, bye, up, down and come.
She sees a physiotherapist, occupational therapist, speech therapist and infant development worker twice a month, and has a person at daycare who provides one-to-one help with her therapies and assists her at mealtimes.
Still, Olivia is behind other kids her age at daycare — something that’s more noticeable now that she’s grouped with three- to five-year-olds — which motivated Miller to create something to help the other children understand why.
“Because it’s such a rare condition and nobody knows about it, I just wanted to give the teachers a resource to teach the other kids,” Miller said.
“[Olivia]’s at a point now where she’s in a ‘big kid’ room and she’s not walking [on her own], she’s still in diapers, she can talk but her comprehension is at a probably nine- to twelve-month-old [level]. She can do simple commands like ‘up’ and ‘help please’ and stuff like that, but when all the kids are chatting they’re probably like, ‘What’s going on? Why can’t she talk?’”
With the book now published, Miller will be distributing copies to all the kids at her daughter’s daycare this week.
Looking forward, Miller said she plans to write more books about WS inspired by Olivia’s experiences as she gets older, with the next book likely coming about the time Olivia starts kindergarten.
“I kind of want this to be an ongoing education [about] her, so every couple of years I’ll write a new book that’s age appropriate for her class [about] what she’s going through at that time, and gift that to her classmates then,” Miller said. “A lot of people with Williams syndrome when they get older they struggle with depression and anxiety, so that will be the education when she becomes a pre-teen or a teenager.”
“I’m just here to create awareness and a resource for when people first find out that their child has a condition and also to educate their classmates,” she said. “Because I don’t want it to be a secret, I don’t want people to say there’s something wrong with her but we don’t know what it is and we don’t talk about it.
“It shouldn’t be like that, you should be able to talk about it in an open way and have it accepted.”