ROCKINGHAM — Tawlia Watkins, a 1989 graduate of Richmond Senior High School now living with her family in Rock Hill, South Carolina, became an unlikely advocate for Crohn’s disease when her youngest son, Free, was diagnosed four years ago.
At age 8, Free was found to have Crohn’s disease, which traditionally affects people much older than him. The condition, Watkins said, differs in severity and range of symptoms from patient to patient, but causes inflammation of the lining in the digestive tract. For Free, his Crohn’s has resulted in two surgeries to remove parts of the bowel. He is often in pain and has not attended school for two years.
“I am passionate about this,” Watkins said. “Crohn’s has disrupted our life for the past four years. We spent nine entire months of 2016 in the hospital. We’ve had two surgeries last year. He now has an ostomy bag. We just got out of the hospital last Monday. We were there for 10 days, and then we were flown to Chapel Hill for an additional seven days. We didn’t have to have another surgery, knock on wood, but with Crohn’s, you never know. Crohn’s does not let you plan ahead.”
For Free, Crohn’s has been persistent since it was discovered he had it.
“Free has not had remission the entire four years.” Watkins said. “We’ve tried Remicade, we’ve tried Humira. We just finished Entyvio. It’s an infusion. He’s had a PICC line for the last year. Those infusions did not work. Now we are on another, experimental drug that no child in the country has taken. He’s the first child. You go in and you sit for four hours while you get infused, and because it’s new, they have to watch you.”
She said Free’s battle with Crohn’s followed a bout of strep, which he and his sister both had around the same time.
“He had ulcers in his mouth, so his doctor called in a ‘magic mouthwash,’” she said. “It worsened. In five days, the ulcers were everywhere. His bottom, his mouth, down his throat, his esophagus — just everywhere. When the doctor saw us, she said, ‘I think it’s Crohn’s. We need to get him to GI now.’”
After confirming the doctor’s suspicions with an endoscopy, colonoscopy and biopsies, Free went five days without eating or even speaking. His body was riddled with ulcers.
“The only thing that really helps Freeman is steroid,” she said. “But steroids are not good for your body. Right now, since we’ve gotten out of the hospital six days ago, he’s having a lot of joint pain and swelling. Not only the Crohn’s but also the side effects from the medications. We went to Chapel Hill (Tuesday) and we’re having joint swelling, and his knees and ankles are swollen. He’s walking around like a little old man again.”
Watkins said Free has traveled far and wide for treatments, but he now has a team in Charlotte that is closer to home. Whenever things appear to take a severe turn, he’s sent back to Chapel Hill. Good days are few and far between, but Watkins said her son makes the most of the good times.
“When Free’s good, he’s really good — but when he’s in a flare, it’s really bad,” she said. “We’ve gone from screaming to yelling. This last time, he started having seizures. That’s something new, so we didn’t know if it was the medicine, if it’s a side-effect from his disease. He seized twice while we were in the hospital, so that was another reason for them sending us to Chapel Hill, just to see if there was anything neurologically going on with him.”
Watkins said that while she knows Crohn’s isn’t cancer — she lost both her parents to cancer — Crohn’s can be just as bad in terms of how disruptive it is to the lives of patients and caregivers. Free missed all of fifth grade, and has missed sixth grade so far this year. He sometimes gets to see his friends, but often doesn’t have the energy.
“When you’re in the hospital for three and four weeks at a time, you tend to lose your muscle mass, endurance, everything goes away,” she explained.
At 5’4” in height, Free once dwindled to a mere 80 lbs and has nutritional deficiencies.
“His weight is back up now, and he looks good,” she said. “But his foods are so restricted and he’s still not getting his daily calories each day, so we have to do another supplement. He hates Boost and Ensure now. My goal is just to bring awareness to this disease”
A blogger, Watkins documents her family’s experience at www.allthingstala.com.
“I have an event coming up on April 8 in Charlotte,” she said. “Child Life is an excellent program in the hospitals. They come around and provide activities, toys, even company if the kids don’t have any. They provide service dogs, anything to keep the kids occupied. My event, All Things TaLa and the Purple4Free Foundation, is a toy drive. All the toys will go to Novant Children’s Hospitals and their Child Life program.”
The toy drive, called “Toys, Talk and Tea” begins at 2 p.m. on Saturday, April 8 at Luca Modern Italian Kitchen, 1523 Elizabeth Avenue in Charlotte.
“I started the Purple4Free Foundation to give back, whether they have Crohn’s, cancer or whatever they may have,” she said. “They still deserve to be kids. My child has basically lost his childhood.”
She said that those battling the disease are not the only ones who need caring for.
“In All Things TaLa, the ‘TaLa’ is teaching, advocating, learning and achieving,” Watkins explained “My goal is to advocate for the advocates, because if you don’t take care of you — you go down. And if I’d had someone tell me that two years ago after I lost my mom, I wouldn’t have been medicated or almost on the verge of a nervous breakdown. You get so engrossed in your family member’s illness, you forget about yourself. If you’re not healthy, there’s nothing you can do for that person. It was hard, but we made it, our entire family.”
With the help of husband, Benny, and her two older children Quan and Benea, they have all managed to care not only for Free, but for each other — and in the process, Watkins has found a calling.
“I want to bring awareness to Crohn’s, bring awareness to self-help,” she said. “We are big advocates of meditation and prayer, your faith and all those things that tie in to make you centered to be beneficial to your loved one. You have to take care of yourself. It’s not selfish to take time out for you.
Watkins took care of her mother, former jailer Jackie Patterson, who was dying of cancer while working full time and dealing her son’s illness.
The experience caused her to give up her job in corporate America, but Watkins said sharing the message of self-care is an important part of her work with All Things TaLa and the Purple4Free Foundation.
“I was going, going, going, going,” she recalled. “My body was saying, ‘You’ve got to stop.’ But I kept going and going. You have to stop though, and take that moment for you. My purpose is, I feel, to be an advocate for Crohn’s, but also an advocate for advocates and caregivers.”
Watkins is also involved in the Take Steps for Crohn’s and Colitis walk in Symphony Park, Charlotte on June 3. To register or donate, visit www.cctakesteps.org/charlotte2017 and sign up under team name Purple4Free Pandas. For information, email Haley Price, Take Steps Manager, at email@example.com.
“I’m planning something for here, too,” Watkins added. “I want to turn Richmond County purple for Free. I’ll have more information on that soon.”
Reach reporter Melonie McLaurin at 910-817-2673.