Benji's Village
Submitted by the Children's Hospital Foundation
Persistent mouth sores at age three. At age eight severe nausea started. And when their youngest son Benji was 12, the bleeding began. As each symptom showed up, they were given seemingly sound reasons such as a stomach virus or puberty, but local parents Jessica and Joel Cogan were naturally left worried.
At Passover Seder in 2019, extended family members noticed how pale and lethargic the now 14-year-old boy was looking. The usually spirited teen, who loves hockey and ultimate, was obviously not himself and had started to miss a lot of school. So Jessica pushed vigorously for a referral to a pediatric gastroenterologist and Benji was seen by Dr. Wael El-Matary at Children's Hospital of Manitoba.
After a thorough look at Benji and the family's medical histories, and several tests including a colonoscopy and endoscopy, Dr. El-Matary was able to give the Cogan's a definitive diagnosis.
"When your child is sick, it is hard to remain unemotional and the staff at the Children's Hospital understand that. I felt validated when I was told by numerous nurses and doctors there that I was right to trust my instinct that it was not just a stomach virus," says Jessica.
It was in fact one of the most severe pediatric cases of ulcerative colitis that this team of doctors and nurses had seen. But Dr. El-Matary says that Crohn's and Colitis in Jewish youth is fairly common, "for example, the Ashkenazi Jewish population has a 2-4 times higher likelihood of having Crohn's disease. From research available on this, we understand that this population has genetic factors that increased many generations ago that have increased the prevalence of this disease."
Thankfully the Cogan family now has answers, but the path to get there and the continued follow-up is a strenuous journey for young Benji. "Crohn's and Colitis testing and follow up can be invasive and uncomfortable for children because it currently involves bloodwork, enemas and bowel scopes," says Dr. El-Matary.
To help kids like Benji, the Children's Hospital Foundation is currently fundraising to purchase a unique ultrasound machine that will take the place of painful scopes. "This special ultrasound will reduce the need for these uncomfortable tests and can also help us better identify how well a patient is responding to therapy," says Dr. El-Matary.
Jessica hopes other kids don't have to go through the same process. "If their equipment, research and other resources are as cutting edge as possible, the doctors and nurses at Children's Hospital can better help families. This new ultrasound can play an important role in the advancement of disease research and treatments."
Today, Benji is doing much better. Although there are some not-so-good days, medication keeps his symptoms at bay, and he now has a strong village around him.
"The Children's Hospital is a community that we are now a part of and we are grateful that we are able to access its skilled and knowledgeable professionals and resources. This is made possible, in large part, by the generosity of others who saw value in giving their support to the Children's Hospital to help families in need or in crisis. This is what community is and it is so very Manitoban. There is no 'thank you' big enough to cover our gratitude," says Jessica.
Never is the old proverb it takes a village to raise a child truer than when a child is ill. When that happens, more than ever, a family needs support to ensure they can raise a happy, healthy child. Thankfully for the Cogan family, their village includes staff at the Children's Hospital. You can be part of the village too - to support the Children's Hospital Foundation in purchasing the ultrasound machine that will reduce uncomfortable tests and treatments for kids, visit Goodbear.ca/CrohnsUltrasound.