When someone you love — your partner, a child, a parent or another family member — is diagnosed with a lifelong illness it impacts you as well.
Ted and Mandy’s family has been battling chronic illness for years with their son, James*, being diagnosed with Crohn’s disease at age 13. As parents of a child with Crohn’s, they know just how devastating the disease can be.
Ted and Mandy’s journey with Crohn’s & Colitis Australia began in 2001 as they struggled to make sense of the insidious disease that had no cure and a harsh regimen of medication. The physical challenges were immense, with James facing side effects from his medications, but his parents also found the psychological impact of the condition on their son in some ways to be just as confronting. “The psychological impact of the disease was as bad as the physical,” Mandy shared.
In the face of their son’s hardship their response did not happen overnight.
Both parents soon realised that not only was there are a lack of awareness and support surrounding Inflammatory Bowel Disease, there was also little funding for research. “IBD, I think, has gone under the radar for all sorts of reasons for many years just because people were too embarrassed to talk about those issues. I think that’s something that has definitely changed. There’s more openness, more discussion about the impact of this disease.”
The limited funding afforded to research was particularly distressing for Ted and Mandy who wanted to believe that a cure for the disease was possible in the future. Advances in treatment were also developing at a disheartening rate and brought little comfort to patients with a disease which “you’ve got for life, and even when you go into remission you wonder if it might come back. The future is uncertain.”
Some 14 years after diagnosis, Ted and Mandy, in 2015, decided to donate $75,000 to a research grant that would fund a PhD student’s investigation into IBD.
“As a parent, if you could go back, you would not want your child to suffer as our son suffered, especially in those early days, so you just give money because you feel it might alleviate that problem for somebody else.”
Being able to meet the researcher that they supported, Chris, only confirmed that they were on the right track. “I think one thing that really excited me,” Ted said, “was for him to say that, effectively, unless he had this grant, he couldn’t do this research.” There was meaning to be found in the knowledge that they had made a difference, and that their generous donation had resulted in something concrete.
Ted and Mandy’s hope that medical science will find a cure has helped them to stay strong in the face of a chronic illness, and this faith is something that they are hoping to share with others. “We hope that with science and medicine, you can uncover reasons for why these diseases exist, and I guess it’s that belief that knowledge will hopefully lead to a cure or better treatment,” Mandy explained.
Ted and Mandy wish that others will be moved by the same desire to find better treatments, new medications, and even a cure for IBD. For them, one of the most satisfying parts of funding a research grant is the confidence of knowing exactly where their money is going, and what it is achieving. “I felt quite excited that at least we are making some form of difference, and that without our assistance that wouldn’t be happening, and to hear Chris’s words, I felt quite emotional.”
Ted’s advice to people who are thinking about donating to research, but are daunted by the size of the issue, is this:
“We’d love to think that there’s a cure, but in the meantime we’d love to think that there’s a way in which, with research, you can find a way of living with Crohn’s or colitis. If you do want to make a difference, it doesn’t matter how much you give, anything is better than nothing.”
After the success of their 2015 grant research, they pledged another research grant for 2019-21, which has been awarded to Dr. Betty Wu.
Today, we are calling on you to help us raise another $75,000 to fund a successive research grant. Donations are urgently needed to maintain the momentum of previous efforts into developing better treatment for IBD and finding a cure.
By raising funds for cutting-edge research in IBD, CCA can move closer to creating a future where no one lives with or suffers from IBD. Every discovery is a step forward into this future and it is thanks to your donations that researchers are making progress towards a solution.
Please give generously to support vital research into IBD and help CCA fund another research scholarship.
Chief Executive Officer
Crohn’s & Colitis Australia
*Names have been changed for privacy