In preparation for the Crohn’s and Colitis Foundation of America‘s (CCFA) Take Steps fundraising program, a nationwide event featuring a series of fundraising walks, the non-profit organization is also celebrating fatherhood. CCFA is seeking to highlight the importance of fathers, either as patients or caregivers, in families affected by the burden of inflammatory bowel diseases (IBD).
Despite the fact that the prevalence of IBD is equal in both men and women, men have a higher probability of being diagnosed with ulcerative colitis, particularly later in their lives. In addition to raising awareness about the problem of IBD among men, celebrating fatherhood also involves celebrating fathers’ roles within the family, providing hugs, jokes or a shoulder for spouses or children with the disease.
The organization is sharing the stories of four men, Russ, Kevin, Raymond and Bishop Thomas, who represent thousands of fathers who struggle with IBD in their families, and who are joining CCFA to participate in Take Steps. The fundraising program, the largest one organized by the foundation, includes over 140 walks throughout the country and aims to increase both funding and awareness to help IBD patients.
Three years ago, Russ’ son Keegan started experiencing severe abdominal pain, but it was only months after that the doctors were able to diagnose him with Crohn’s disease. Russ saw his and his family’s life completely altered, but discovering the CCFA and other patients and parents helped them deal with the diagnosis. Now, Russ has participated in Take Steps, while Keegan was recognized as 2015’s Take Steps Honored Hero for the Houston Chapter.
“No parent wants to hear that their child has an incurable disease,” said Russ in a press release. “Like any Dad, I had coached my son in sports, had been his Den Leader and Cubmaster, and watched him or participated with him in many father and son activities. I always assumed he would be in good health. Now fear gripped me because I was concerned that he wouldn’t be able to live a normal life. Even worse, no parent wants to outlive their child.”
“With all of this said, one thing I have come to peace with as a Dad is that my son is as tough as nails. Where I admire my son greatly though, is how he soldiers on in life, in all of his passions. I’m very proud of my son. He understands that Crohn’s disease is a part of his life. He does not want to give into it. As his father, I don’t live in fear of the disease and its ramifications for my son any longer.”
Drew is also a Crohn’s disease patient, diagnosed in 2013 when he was eight years old, and his father, Kevin has experienced gastrointestinal medical problems in the past. After the diagnosis, Kevin’s family started engaging in the activities sponsored by the CCFA, searching among other patients and caregivers for both support and knowledge. Kevin was also one of the participants at Take Steps Portland, as his son served as the Honored Hero.
Kevin gained knowledge about IBD due to Drew’s diagnosis and by getting involved in CCFA, which made look at his own health differently. “After almost 2 years since Drew’s diagnosis, I made an appointment to see a GI,” explained Kevin. “All blood tests came back with the same indicators of Crohn’s as Drew’s had been. I had my first colonoscopy and endoscopy but still no diagnosis of IBD. I could see and feel Drew’s disappointment when I told him. He didn’t want to be alone.”
Raymond was diagnosed with Crohn’s disease when he was a teenager and became involved with CCFA years later. He is the star of Team Everybody Loves Raymond, but due to the treatment, including numerous surgeries, he can no longer participate in Take Steps. His daughter Nicole, on the other hand, was present at the walk this year to help raise donations and find a cure for her father.
“He is my hero and my family’s rock. How he has survived and kept positive this long while his body fights against him is beyond our comprehension,” said Nicole. “I just couldn’t take it any longer and I knew I wanted to do something to help fight this terrible disease not only for my dad and my sister (who also has Crohn’s), but for the countless others who suffer everyday from this terrible disease.”
The fourth man being celebrated by the CCFA is Bishop Thomas, who is a member of the foundation’s National Board of Trustees, helped raise $18,000 for the Baltimore Take Steps Walk last year leading the Team New Psalmist, and is involved in activities in Maryland for several years. “My inspiration comes from my son, Joshua, who was diagnosed at the age of 17,” expressed Bishop Thomas.
Joshua was also elected 2015 Honored Hero for the Baltimore Take Steps Walk and said that it is in his father that he finds strength to deal with the obstacles of the disease. Bishop Thomas helps not only his family but also other members of the community and gather more than 350 people to participate in the walks, while his son is following his footsteps and recently joined CCFA’s Maryland Board.
CCFA is the largest voluntary non-profit health organization in the country and was among the associations that participated in the global celebrations of the World IBD Day last May 19. The initiative is organized every year on the same date to raise awareness about IBD and this year CCFA and the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA) launched a global video campaign, encouraging patients to share their experience in a short video under the theme “United We Stand.”