Providing Kids With IBD An Easier Life
Patient Perspective Robbie’s Rainbow’s founder shares her journey, from her child diagnosed with IBD to creating a charity that assists IBD-affected families with aid.
At the age of six, Robbie Murray was diagnosed with Crohn’s disease where he dropped a significant amount of weight. Inspired by a child who had the same diagnosis as her son but was unable to receive treatment, Robbie’s mom, Kate Murray, started Robbie’s Rainbow. Her charity helps kids with IBD access the necessary care they need.
Mediaplanet: How has running a charity influenced you as a family?
Kate Murray: The charity has allowed us to connect with children and parents from all over. We’ve created many lasting friendships, and many times those families have provided encouragement and support to us as a family as much as we do for them. The charity really has helped create a community of caring for parents of children with IBD. My children have grown up lending their time to a cause that is so close to them and understand the importance of raising awareness. We have all learned from our interactions with other IBD children that this disease affects every patient differently. Most importantly, the charity has brought us closer together. We learn from each other and appreciate the love and strength we give to one another, especially when faced with a health challenge like Crohn’s disease.
Every person I have met, every child we have helped has been incredibly fulfilling. Our charity has allowed me to cope with this disease. As a caregiver, I often feel like a bystander, knowing my love isn’t always enough to take away the pain my son may be experiencing.
MP: What has changed for Robbie’s Rainbow in the past five years?
KM: We started out by providing aid to help young IBD patients access treatments deemed critical by their health care team, treatments not covered by provincial or private health plans. Through discussions and interactions with families, we learned that there was a want and need for educational resources specifically written for children and caregivers. So, creating and building resources became just as important as the funding we provided.
We won the Association of Fundraising Professionals (AFP) Outstanding Small Organization Award in 2014.
Over the past five years, we’ve had such fantastic experiences working with other patient groups focused on inflammatory bowel disease, such as Crohn’s and Colitis Canada, the IBD Foundation, IDEAS, the Canadian Digestive Health Foundation, and BadGut in British Columbia.
We have been able to help 156 children access critical treatments and care. From the beginning, we fully embraced being a grassroots organization, believing and investing our time in creating lasting relationships with families and businesses in many communities.
MP: As Robbie’s Rainbow expands its reach, what are your plans for the future?
KM: We seek to play a larger patient advocacy role at the government level. It is important for us to respectfully represent the voice of young IBD patients and their families, to express their concerns and challenges, to ensure the gaps in care and coverage they are facing are strongly conveyed, and to provide proactive and valuable input.
MP: Are the effects of IBD affecting Robbie differently now as a teenager?
KM: Recently, Robbie had to leave a treatment that kept him in remission for nine long years, as it was no longer working for him. Being in remission allowed Robbie to go to school regularly, spend time with his friends, and participate in activities. It helped build his confidence, gave him a sense of security in knowing he didn’t always need an exit strategy to find a washroom, to just be himself, to be Robbie, not Robbie with Crohn’s. Now he is on a new treatment, and we are so hopeful that it will provide the same health and emotional benefits as the last.
MP: If you could give advice to families beginning to cope with children with IBD, what would you tell them?
KM: The early days of diagnosis can be overwhelming and yes, a little scary. However, you are not alone and the days ahead will get brighter. Lean on those around you for support; don’t be afraid to ask for help, as family and friends want to help, they just might not know what they can do for you. One of your biggest resources is your child’s health care team, and communication is key.
MP: How do Robbie’s Rainbow and Crohn’s and Colitis Canada work together to tackle IBD?
KM: We are both heavily invested in improving the health and wellbeing of those living with inflammatory bowel disease and look to each other to support initiatives that impact IBD patients.
Robbie’s Rainbow plays a role in selecting recipients of Crohn’s and Colitis Canada’s IBD Scholarships, and we promote Camp Got2Go, as every child deserves the experience of creating new friendships and memories despite living with a chronic illness.