麻豆视频

True love and unwavering faith can move mountains, as demonstrated by the Olasumboye family’s remarkable journey with their son, Adaramola, affectionately known as Dara. In the face of adversity, they found strength and hope, ultimately triumphing over sickle cell disease through a life-changing bone marrow transplant.

The Struggles of Sickle Cell

Adewale and Adedoyin Olasumboye are both blood type AS, which means they are carriers of the sickle cell trait. Statistics say that their offspring have a 25 percent chance of having sickle cell disease. Despite their fears, they were encouraged by love and faith, welcoming three children into the world: Yeni, Dara, and Tolu. While Yeni and Tolu were born healthy, baby Dara was diagnosed immediately with the disease.

Confronted with the devastating news, Adewale said, “We just have to face the challenge. I’m going to love him and do everything I can to give him a good life.”

Dara’s health issues began when he was only six months old. With sickle cell, blood cells are rigid and crescent-shaped, which causes them to get easily stuck in blood vessels. A “crisis” is when blood flow becomes so blocked in a specific body part that it causes severe pain. Dara had his first crisis at age one.

During those early years, Dara had to visit the hospital several times to get through these events. “It was devastating,” said Adedoyin. “As a parent, you do everything you can, but nothing seems to work. It makes your heart ache.” On a more beautiful note, music played a crucial part in helping Dara cope with his condition. “Dara enjoys dancing,” Adewale said, “even if he’s in pain.”

In 2018, the family moved to Corning, New York. They wanted the best care for Dara. Adewale asked his former doctor for a recommendation and was referred to Golisano Children’s Hospital (GCH), which offers the region’s only Pediatric Hematology program. GCH is a designated National Marrow Donor Program Transplant Center.

Suzie Noronha, MD, a pediatric hematologist, provided a warm welcome for the Olasumboyes. She knows firsthand how her patients can be in and out of the hospital for severe pain. Noronha built a trusting relationship with the family through many visits, answering all of their questions and providing detailed information about all the treatment options available. “Dara’s parents had done their research before coming to us,” Noronha said, “and knew that as children with sickle cell grow into adults, even more complications can develop. Knowing that they wanted to stop Dara’s pain and prevent those future ailments, I turned the conversation to bone marrow transplant. At this point, it’s the only known cure to really get rid of the disease, but of course, it’s not a walk in the park. It’s a journey full of challenges, both physically and emotionally.”

The Defining Moment of Their Lives

Watching your child suffer is excruciating. Simply managing pain through medications wasn’t enough. Dara’s family longed for a cure. Noronha discussed at length with Dara’s parents the risks of transplant, such as infection or fever. Anyone who receives a transplant can develop graft vs. host disease (GVHD), in which the donor’s immune cells see the recipient’s body as foreign and essentially launch an attack on it, leading to rashes or organ problems. However, it’s less common in younger patients, especially those with a full match to their donor. Ultimately, there is also a very small chance, around 4 percent, of death. Every parent’s worst fear is losing their child.

“It’s really tough for some families to come to terms with these risks, even when the chances are very small,” said Noronha. “But one of the most agonizing realities for anyone who has sickle cell is the relentless, severe pain. It’s such a burden on them. As they grow older, adults can develop even more complications, like liver, kidney, or lung problems. Sadly, this often means adults can be too sick to endure a transplant.” It’s an agonizing process to make medical decisions on behalf of your child, especially when there is no easy answer. Dara’s parents felt that the transplant was the best way to give Dara the life that he deserves.

Once decided, Noronha introduced the family to Jeffrey Andolina, MD, MS, the director of Pediatric Bone Marrow Transplantation, who prepared the whole family for what was to come. The first step was to find a donor. Typically, siblings are the initial option to consider, since there’s a 25 percent chance they’ll be a full match. Both of Dara’s sisters were tested, and little Tolu was a perfect match.

How do you talk to a six-year-old about being a bone marrow donor to their big brother? Only members of the family truly know what each other’s values and beliefs are, so Andolina and Noronha offered guidance to the parents, then Mom and Dad had the delicate talk with Tolu. Adewale was impressed with her and how mature she was. “I can save him?” she asked with a smile on her face. “Yes, I’ll do it!”

Andolina notes that every donor will have their own transplant team to specifically advocate for them. “It’s also perfectly safe,” he said. “The donor’s bone marrow grows right back after a few weeks.” If there was any doubt a donor didn’t want to participate, they would not move forward. But Tolu, the loving little sister, was actually excited to help her big brother. Adedoyin recalls how supportive Andolina was. “He was always available for us. We could connect with him anytime to ask questions.”

The transplant process spans several stages. Dara, now eight years old, braved extensive preparation as he was admitted to GCH for a one-week, pre-transplant stay. He had a Mediport implanted into his chest, where the bone marrow will be inserted later. He received a series of transfusions to remove as much sickle cell blood as possible and replace it with healthy blood. This helps reduce the number of unhealthy cells in his body during the transplant. Dara also went through chemotherapy for a week. This essentially eliminated his own bone marrow that produced those sickle cells and wiped out his immune system, allowing his body to accept the new bone marrow.

With Dara prepared, it was time to bring in Tolu and perform the actual transplant. On May 17, 2023, half a liter of bone marrow was taken out from her hip. When the medical bag was brought into Dara’s room, he exclaimed, “Is that my sister’s blood? How is she? I want to see her!” Her bone marrow was then slowly injected into Dara’s Mediport over an hour. Andolina said, “The stem cells in the donor bone marrow get into Dara’s bloodstream, then they know to home in and go into his bones and start growing new blood.”

The hospital was Dara’s whole world as days stretched into weeks for his recovery. Time seemed to stand still as he missed his own bed and playing with his friends from home. His parents were torn between the anguish of seeing him hospitalized and the hope that this was the cure that would forever change Dara’s life. Their spirits never faltered, though, and they all remained resilient through their unwavering faith and love for each other.

“It was a defining moment in our lives,” said Adewale. “We were so anxious and wanted to make sure Dara was OK during all of this. Not only was he going through so much physically, the emotional toll of being away from home for a month was rough on him. But our medical team did an amazing job. They loved Dara, they gave him a lot of care and attention, which helped keep him smiling.” Because their hometown is an hour-and-a-half drive away, the hospital arranged for the family to stay at local hotel for six weeks after the transplant to be close to Dara as he recovered. Once he was able to leave the hospital, he still visited the clinic for checkups several days a week.

Having Hope and Health

Andolina reflects on how it was the perfect transplant. “It went smoothly for three reasons. One, Dara was otherwise a pretty healthy kid; he had no other complications. Two, we had a perfectly matched donor with Tolu. And three, they were a really focused, reliable family that did everything asked of them. Dara took all his medications, came to all his appointments, and that’s a huge credit to Mom and Dad.”

It is now one year later, and Dara is doing wonderfully! After spending the summer recovering and gaining strength, he went back to school with new enthusiasm and is excited to get involved in sports. He is, essentially, cured. Sometimes, Dara will say, “Daddy, can we go say hello to my nurses?” Adedoyin reflects that the nurses were so supportive, they became like friends and family.

Breathing a sigh of relief now that Dara is healthy and living his best life, Adewale and Adedoyin want to help others who are facing this disease. Back in their home country, Nigeria, babies born with sickle cell disease are often helpless. The Olasumboyes are working on starting a foundation to help those babies. The program will educate people on sickle cell disease: how to manage the condition and how to find the cure if they get a match. Adewale said, “As Dara grows up, he’ll have something incredible to commit himself to.” As this family knows, having true love and faith can work wonders.