East Clarendon community holding ‘prom’ for boy fighting illness

B.J. Wilkes has a bucket list that his family is helping him check off each and every day. He’s wanted to go on a date and give a girl flowers. Check to both. He wants to ride in a real racecar at Charlotte Motor Speedway and meet all his favorite NASCAR stars. He wants to attend prom. B.J. is only 10 and has fought the odds against hypoplastic left-heart syndrome for his entire life, mother Haley Knight-Wilkes said. She knew his life would be an uphill battle before he was born, having been told while B.J. was in utero that he had the condition that leaves someone with two pumping chambers in their heart, instead of the usual four. “Today, he is a bright, charming, kind little boy who has defied the odds at every turn,” said Knight-Wilkes. “I couldn’t be more proud to be his mother.” Knight-Wilkes said that she and her husband, Brian Wilkes, had prayed for a baby for four years. After three miscarriages, the couple was pregnant again in March 2005. Knight-Wilkes’ obstetrician discovered something “not right” with the pregnancy, she said, and she was sent to a pediatric cardiologist. “Dr. Charles Trant confirmed that our son had a congenital heart defect, basically half a heart,” she said. “Scared doesn’t even begin to cover how we felt. The possibility that our son would not live was very real.” B.J. came into the world Oct. 29, 2005, at 4 pounds and 12 ounces. Knight-Wilkes wasn’t even given a chance to hear the little boy cry. “As soon as I gave that last push that brought him into the world, a team of doctors and nurses ran into a room to begin working on him,” she said. “I will never forget the overwhelming fear that came over me at that point.” Knight-Wilkes and her husband were allowed to see the tiny little boy later that night. “He looked back at me and his little hand held my finger tight,” she said. “I knew then that I’d give my life for this little person. Four days after he was born, before his first open heart surgery, I got to hold him for the first and possibly the last time.” B.J. had a Norwood procedure at barely a week old, and came through “amazingly well,” his mother said. At 5 months, he had a second surgery – a bi-directional Glenn. “At 3, he went in for what was supposed to be the last corrective surgery for his condition, a Fontan procedure,” said Knight-Wilkes. B.J. did not do as well as before, and blood would not flow properly to his heart. Doctors lost the little boy for about three minutes. “They don’t know why the body rejected the new blood flow, and they had to go back in and reverse the Fontan back to a Glenn,” Knight-Wilkes said. “B.J. also had a stroke that affected 80 percent of the left side of his brain. We were advised to call our family in because they thought he would pass within the next four to six hours.” Those hours turned to a day, then a week and then a month. Overall, the family spent 178 days in the hospital, half of the child’s entire third year. “Although the stroke left him partially paralyzed on his right side, he pulled through, and despite his physical disability, he is a normal little boy,” Knight-Wilkes said. Today, B.J. is the proud older sibling of a 5-year-old brother, Raylen. Knight-Wilkes found out about her second pregnancy while her older son was in the hospital in 2010. “I tell our story because so many families think they are alone, and I want them to know they aren’t,” she said. She’s continued to share that story even as the family has spent the past few months in and out of the hospital in Charleston, even as doctors have told the family that nothing more can be done for B.J. “(His care team) called a conference on July 21 to speak with my husband and me, and the cardiologists said there are no surgical options left for B.J.,” she said. “His pulmonary arteries are just too small to support his heart and lungs, and he will eventually succumb to progressive tissue hypoxia.” The young boy is not eligible for a transplant, as he is too weak to survive the surgery. With his kidneys functioning at only 50 percent, they also couldn’t handle the anti-rejection medications he would have to take thereafter. So, Knight-Wilkes, her family and several in the community have come together to help B.J. fulfill his “bucket list,” which includes a prom scheduled for 7:30 p.m. Sept. 17 at the East Clarendon High School gymnasium. Organizers are looking for sponsors – those making donations of $100 or more will have a table with the name of their business or whatever they like on it – and $50 donations will have a star showing their patronage. Donations of $25 and less will be displayed on a paper star in the gymnasium. The theme of the prom will be “I Love You to the Moon and Back.” “We want to help him share these memories with the ones he loves before it’s too late,” said Freddie “Crash” Huth, who is serving as treasurer for B.J.’s Prom Committee. Organizers have also set up a GoFundMe account to help with other items on the child’s list. “We want to assist him with the fun times that a 10-year-old boy should be able to enjoy,” said Huth. To help with the prom, call Huth at (843) 495-0741. Checks may be dropped off at The Manning Times, 230 E. Boyce St. in Manning. We will get them to the family. Admission to the prom is free, according to Huth, but donations are accepted. To donate to the GoFundMe account, visit bit.ly/2bWqhwA.


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