Talking about Crohn’s disease with kids – new Vancouver book


Erin McPhee, North Shore News

Kellie Robinson’s younger brother Jeff was diagnosed with Crohn’s disease at age 10. In the 23 years that followed, he underwent 26 surgeries and spent countless stints in the hospital.

“But he always had the most amazing spirit,” says Kellie.

To honour her brother, who passed away six years ago at age 33, and to offer support to other families facing a similar diagnosis, Kellie, a freelance writer, has written Jeff Talks About Crohn’s Disease, an informative story and colouring book about the inflammatory bowel disease, available for free through the CH.I.L.D. Foundation (Children with Intestinal and Liver Disorders), based in Vancouver.

Kellie, who now lives in Portland, Ore., grew up in North Vancouver. Her father, legendary broadcaster Red Robinson, and her mother Carole still call the North Shore home.

Growing up, her brother’s health was a constant worry for their family. “I really have some very upsetting memories as a child with my brother because he would wake in the middle of the night in just agony,” says Kellie, who was 12 when her brother was diagnosed with Crohn’s. “He used to say that it felt like glass when he’d eat certain foods.”

Ambulances were always coming to their house and they were constantly visiting him in the hospital. “It just became a part of our family’s routine, you’d go through your day and then there was always a visit to the hospital,” she says.

While it’s better than it was when Jeff was a child, Kellie says she still feels there’s a lack of information available to families about Crohn’s and it’s not talked about as much as it should be.

Kellie says the idea to write a book of this nature came to her suddenly. “Just a couple days after (Jeff’s) death actually, a voice, who I now believe is God, spoke to me pretty much and said, ‘You need to write a children’s book on Crohn’s disease,’” she says.

Kellie took the message to heart and started writing, putting together an outline on any scrap of paper she could find. With a manuscript eventually completed, she continued revising the work. For a while, it just sat there until earlier this year when things started moving again, aided by her father Red, who’s on the board of the CH.I.L.D. Foundation.

“Everything started to click and come together,” says Kellie. “Everybody donated their services, it was amazing.”

Kellie was able to draw upon her brother’s experiences, as well as her own unique medical history — she had a brain tumour when she was a little girl and later developed hydrocephalus which she previously wrote about in Hydrocephalus: A Guide for Patients, Families and Friends. To ensure her story was kid-friendly as well as medically correct, Kellie worked with Annie Terry, who works in pediatric gastroenterology in Portland and Amy Medovoy, a child life specialist in Sacramento, Calif.

Graham Harrop, a cartoonist for The Vancouver Sun, provided the illustrations. “He donated his time and talent,” says Kellie. Printing services were donated by Richmond’s Kirk Integrated Marketing Services.

The book was launched at an event held in Vancouver this fall. “A lot of the parents and families that were there said that they were thrilled that there was something out there finally that they could sit and read to their children and explain to them in not scary terms what the condition was about and what to expect at the hospital and the doctor’s visits,” she says.

Kellie says she hopes doctors’ offices and related specialists will opt to carry it. She also sees it being of service in schools, as by educating youth early, they’ll have a better understanding of the disease if someone in their social or family circle is diagnosed.

Free copies of Jeff Talks About Crohn’s Disease are available by contacting the CH.I.L.D. Foundation, phoning 604-736-0645 or visiting
© North Shore News 2008