GRAFTON — Grafton High senior Amara Ouattara has seen his older sister Yene endure the agony and suffering caused by sickle cell disease.
Yene, a 2016 Grafton High graduate who earned her bachelor’s degree in accounting from Emmanuel College earlier this year, has experienced a lifetime of excruciating pain in her back, hips and shoulders, debilitating exhaustion, frequent hospitalizations, blood transfusions and numerous absences from school due to the inherited red blood cell disorder.
It has been difficult for Amara to witness.
“Of course,” Amara, a star soccer and basketball player, said while sitting next to Yene on a bench Monday afternoon outside Grafton High’s main entrance. “She’s always in the hospital, and when I’m home without her, I miss her all the time because I love her so much.”
This summer, in a supreme expression of love for his sister, Amara donated his bone marrow cells to Yene. The procedure was performed at Dana-Farber/Brigham and Women’s Cancer Center in Boston.
Those affected by sickle cell disease have red blood cells that contain an atypical type of hemoglobin, and the cells distort into a sickle shape and have difficulty passing through the body’s small blood vessels. Sickle cells die early, which leaves a shortage of healthy red blood cells. Sickle cell disease can lead to many complications, including stroke.
Bone marrow transplantation can cure sickle cell disease by replacing unhealthy stem cells with healthy cells.
Yene said Amara saved her life.
“He did,” she said. “He gave me a much better quality of life. Being able to live as a functioning adult, especially in today’s society where everything is on the go, I can’t be down for the count for days. It’s been a dream of mine. It’s tremendous what he’s done for me.”
September is National Sickle Cell Awareness Month.
Yene said Amara was tested a few years ago to make sure he was a match for the transplant. They decided to wait until they were older and “mentally ready to do this,” Yene said, because it is an intense process.
“It takes a lot out of the donor, and it takes a lot out of me,” Yene said. “I have to be in quarantine, essentially, for a year of my life. It’s fine, because with coronavirus everyone is in quarantine, so I’m not missing anything, but it is a huge process.”
Amara prepared for a bone marrow harvest by eating a lot of protein to keep his stem cell counts up, he said. While Amara was in the hospital and under anesthesia, bone marrow was extracted from his pelvic bone with a syringe.
Amara said he couldn’t really walk or move around too much for the first few days after the procedure. He also went through a subsequent procedure that involved temporarily removing blood from his body, separating out the stem cells, and returning the blood to his body, he said.
Before the transplant, Yene went through chemotherapy.
“It was to eradicate all the sickle cells,” she said. “The day after chemotherapy stopped, I got my transplant. They gave me his blood cells, which was amazing. The team (at Dana-Farber/Brigham and Women’s) is just so great. I started to recuperate, but there are (side effects) that come on with a stem cell transplant. You get mouth sores, nausea, vomiting. While you’re feeling the effects of the stem cell transplant, you’re also feeling the chemo effects, and it’s a really wild ride.”
Yene, who was hospitalized for about a month, said Monday, which was a rare day out for her, that she was feeling pretty good.
“I’m feeling a lot better,” she said, “a lot more energy, just happier.
“And I’m smiling under my mask.”
She also wore gloves and is obviously being extremely cautious during the pandemic.
“Now I can’t really go anywhere,” Yene said, “but everybody wearing masks and washing their hands and social distancing, it’s definitely easier for the recovery process.”
Yene goes for weekly checkups in Boston.
“They check my blood and make sure I’m not rejecting the donor,” Yene said, “make sure everything is going smoothly and my counts are going up. You reach milestones after three months, six months, and you can go out more, but with COVID, it’s safer to just wait for COVID to pass, then go out and be in public. In a year, I’ll be fully recovered, which is the goal. I’ll be able to run and do things I really want to do in my life, get jump started on my adulthood.”
Despite all those missed days of school, Yene was an honor roll student in high school and made the dean’s list in college.
Amara, who plans to study computer science in college, will captain the boys’ soccer team this fall. He is a standout defender. Grafton coach Dave Mitchell called Amara “an amazing kid, a great leader, selfless.” Last winter, Amara, a forward on the boys’ basketball team, averaged 16.5 points per game and was the second-leading scorer in SWCL A.
The bone marrow procedure sidelined Amara from sports activities for four weeks, but, as it turns out, Grafton won’t begin its fall season until next month, so he’ll be good to go.
“He’s such an impressive kid,” Mitchell said. “Knowing him for four years, he has such a maturity about him. He’s so kind and respectful to every player on the team. When I first heard (what he was doing for his sister), it didn’t really surprise me. It shows you his maturity and his selflessness. The world right now, with COVID and everything, it warms your heart to see this side of humanity.”
Grafton students began hybrid learning Wednesday.
“Amara is preparing for school and preparing for soccer season,” Yene said. “It takes a lot just to do something like this for me and his taking his time and energy to focus on others, too. He’s such a leader in every aspect of his life.”
Amara said he was initially, and understandably, nervous about the procedure.
“I had never really been to the hospital and had a procedure done,” he said, “and I had a fear of needles, but I had to get over that pretty quickly. Seeing my sister (in the hospital) almost every single month of her life, I said, ‘OK, I can do this easily if she can do it.’
“It makes me feel happy that I did,” Amara said.
The Ouattaras’ mother, Grace, has been taking extra special care of both her children.
“She’s been so supportive and amazing,” Yene said.
Their father, Siendou, passed away several years ago.
The bond between their remarkable children is so evident, as is their gratitude and admiration for each other.
“I can’t thank Amara enough,” Yene said. “It means the world to me. He’s my best friend. I love him so much. He didn’t have to do this. It means so much that he volunteered to do this. He did it with a smile. He did it happily. I couldn’t ask for a better brother.”
—Contact Jennifer Toland at [email protected] Follow her on Twitter @JenTandG.
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