‘You’re absolutely powerless:’ How blood donations can make all the difference for those living with sickle cell disease

Blood donations are critical and really do make all the difference for those living with diseases like sickle cell.Sickle cell disease is a blood disorder that affects how oxygen is carried through the body. Giving blood could mean life or death for patients living with the disease.Like most 11-year-olds, Trevon Robertson loves to play and have fun. He especially loves sports.”Trevon is an exciting, wonderful, 11-year-old that brings so much joy to our lives,” said Trevon’s father, Roger Billingsley-Hayes.But Trevon does face some limitations that you wouldn’t know by simply looking at him.”Trevon ends up being this incredible kid that has brought us a whole new way of living — a whole new life,” said Billingsley-Hayes. “So we don’t call it ‘sickle cell,’ we call it ‘super cells’ — because he’s a warrior in this.”Trevon was born with sickle cell disease and, at only 6 months old, had already dealt with several challenges.”It is very difficult,” said Billingsley-Hayes. “Because you’re powerless. You’re absolutely powerless.”In 2018, Trevon had to be intubated because of complications from Sickle Cell. He was in a coma for a month and suffered a severe brain injury.”To see him thriving and growing is incredible,” said Billingsley-Hayes. “But we recognize there are those challenges.”In August of this year, Trevon spent three weeks hospitalized. He nearly had to be intubated again, but a blood transfusion turned things around.”A lot of times when we think of blood donations, we think of car accidents or surgeries,” said Billinglsey-Hayes. “But there are people like Trevon — where we understand the importance of these blood donations for transfusion purposes.”Trevon will receive blood transfusions once a month for the next year.”When I’m not feeling well, I go get my blood transfusion,” Trevon Roberston said. “And once I get done and they undo it. I have more energy for a few weeks, but then I am back down.””The transfusions are life-giving,” added Billingsley-Hayes. “It changes everything to have those.”The 11-year-old has certainly proven he’s a fighter.”I have to deal with pain, having to go to the restroom for a long time,” said Trevon. “I have fun for a few days, and then I am out of the hospital and still weak — and I can’t play. So it’s mostly just pain and stuff.””One thing people don’t understand about people living with sickle cell, is that it affects them from the crown of their heads to the soles of their feet,” said Billingsley-Hayes. “Wherever blood runs, there can be issues, and living with pain is a regular reality for him.”There are around 100,000 people living with sickle cell disease in the United States and around three million people worldwide.”It’s not very prominent in the general population,” said Dr. Alex George, an associate professor of pediatrics at Wake Forest Medical Center & Brenner Children’s Hospital. “But it’s actually the most common single-gene genetic disorder in the country.”The disease causes chronic damage to blood vessels, which, in turn, creates an improper blood flow to organs in the body.”It is really quite a significant disease in terms of harm it causes and limitations it poses on quality of life,” said Dr. George.But, despite those limitations, Trevon keeps his hopes high and his attitude positive.”He said to me, ‘Why did God give me sickle cell?’ and I said, ‘Trey, I don’t know,'” said Billingsley-Hayes. “And in his last hospitalization, he said, ‘Well, God has me here, and he’s going to get us through this,’ and that is a warrior spirit.” WXII 12 will hold a community blood drive on Nov. 15 from 9 a.m. to 6 p.m. at the Home and Garden Building at the fairgrounds in Winston-Salem.