Metro Vancouver mom raising money for rare genetic condition

Life with Williams Syndrome: An Introduction to Williams Syndrome for kids by Amy Miller is currently available on Amazon with the goal to sell 10,000 copies this month

Based on her own experience, a Ladner mom has written a children’s book that she hopes raises awareness and thousands of dollars for research and support of an extremely rare genetic condition.

The release of Amy Miller’s book Life with Williams Syndrome: An Introduction to Williams syndrome for kids, coincides with May being Williams Syndrome awareness month. The paperback is now available worldwide on Amazon for $ 11.50 with all proceeds going to the Williams Syndrome Association in Canada and the US, based on the distribution of sales. Her lofty goal is to sell 10,000 copies by the end of the month.

It was two years ago when Miller’s daughter was diagnosed with Williams Syndrome. Olivia, who turns three next month, is missing around 26 genes on one copy of her 7th chromosomes. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side-by-side with striking verbal abilities, highly social personalities, and an affinity for music.

Olivia is a very happy, content little lady – we have loved her so much from the beginning, as any parents do, explained Miller (née Bonner), a lifelong local resident who also has another daughter with her husband. “We noticed her missing some milestones early on – our first trigger was that she was not smiling when we were expecting her to. The doctors ordered a bunch of tests and about four months later, she was diagnosed with Williams Syndrome.

“We’d never heard of (it) – so we embarked on this journey of learning all about it and how it will affect Olivia medically and developmentally.”

The couple managed to get most of her initial appointments in before the pandemic, including cardiology. Oliva is missing one of her elastin genes which is needed for the body to grow and stretch, including her arteries and veins. That can lead to heart issues and many with Williams Syndrome have needed surgery to repair narrowing of the aorta. Fortunately, Olivia’s heart appears to be functioning well.

Most children with the condition will start walking between the ages of two and three and start speaking at around the same time.

Olivia is currently using a walker, but can say lots of words and will even repeat almost anything her parents say. She sees a physiotherapist, occupational therapist, speech therapist and Infant Development person twice a month.

“She can count to 20, say her ABCs and sing lots of songs. She has a few single word commands down pat – like hi, bye, up, down, come. She cruises around using her walker and her ankle braces give her more stability for standing, ”continued Miller. “She is constantly giving hugs and kisses. Her ability to connect with people is amazing – she loves meeting new people. She is such a gift and a light.

“I’ve learned so much over the past two years though – not only all of the medical details that we need to keep a close eye on for her, but also patience and letting go of expectations. I’ve read so much about Williams Syndrome and made connections with moms with little ones that have the same condition all over the world. ”

That’s what prompted Miller to create her first-ever book. Her 9-to-5 job is working as a controller for Telus.

“I’ve written a short children’s book that will educate people on the condition,” she added. “In the book, Olivia explains Williams Syndrome from her challenges to her gifts in a fun rhyming way that is easy for kids to understand. There is little funding available for research and support for families by purchasing this book, you will help the Williams Syndrome Association. ”

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