For Jimi Olaghere, sickle cell disease once meant a life of limitations, sudden and intense pain episodes and frequent hospitalizations. Today, thanks to groundbreaking gene therapy and generous blood donors, he is reaching new heights.
For Jimi Olaghere, sickle cell disease once meant a life of limitations, sudden and intense pain episodes and frequent hospitalizations. Today, thanks to groundbreaking gene therapy and generous blood donors, he is reaching new heights.
“I don't think I would have had the opportunity to have a gene-editing transplant without blood donations," said Jimi.
Prior to gene therapy, Jimi’s life was consumed by severe health complications caused by sickle cell disease — the most common genetic blood disease in the U.S. He experienced acute chest syndrome, pneumonia, avascular necrosis, lung damage, and more. Once, he suffered cardiac arrest due to not receiving a preventative blood transfusion before a minor surgery.
“Sickle cell was like a dream killer for me,” said Jimi. “I like to equate it to a succession of time bombs in terms of what it feels like living with sickle cell and having all these complications.”
In 2019, hope appeared when Jimi discovered a news article detailing how gene therapy could be used to boost fetal hemoglobin production in patients with sickle cell disease, potentially reducing symptoms.
Inspired to have a better quality of life, Jimi signed up to participate in a CRISPR gene-editing clinical trial under the care of Dr. Haydar Frangoul at Sarah Cannon Research Institute.
"When we went with Dr. Frangoul's team, it was like when Dorothy goes into Oz and all of a sudden everything turns from black and white to color," said Amanda Olaghere, Jimi's wife. "To finally have somebody listening to us and hearing us... it was a relief to know that while we were fighting our fight in the dark, somebody else was doing good work behind the scenes."
Over a year, Jimi underwent the gene therapy process. Before treatment, he received bi-weekly red blood cell exchanges — a non-surgical procedure that replaces abnormal red blood cells with healthy ones from blood donors — to keep him healthy during the trial. During the first phase, in which his blood stem cells were collected and sent to a lab for genetic editing, he received whole blood transfusions after each collection. Post chemotherapy, patients may need platelet donations to increase their platelet levels before receiving the edited stem cells.
“I received about 20 to 30 units of blood in total,” said Jimi, whose had over 200 blood transfusions throughout the course of his life.
Since completing gene therapy, Jimi’s life has transformed. He no longer experiences sickle cell pain crises requiring transfusions. His energy has skyrocketed, allowing him to manage work and family life in ways he never imagined.
Jimi and Amanda now have three children and have transitioned from a life of "Netflix and chill" to one filled with swim lessons, travel, and constant activity. Recently, Jimi hiked a 14,000-foot mountain in Colorado, preparing to climb Mount Kilimanjaro to raise awareness for sickle cell disease.
"It kind of feels like I'm living my dream, but at the same time I’m still able to go after things I've always dreamed of that I haven't been able to attain because of my disease," shared Jimi.
"What I would say to the blood donors who helped Jimi through this process is ‘we could not be here without you,’” said Amanda. “Our story is your story. You've allowed us to not only get to the point that allows us to participate in the trial, but you've supported us throughout the trial, and I can never repay you for what you've done for us."
Joined by Blood
Blood and platelet donations are vital in supporting patients with sickle disease undergoing gene therapies, stem cell transplants as well as those in need of regular blood transfusions to alleviate pain and help manage their disease.
A patient undergoing gene therapy for sickle cell disease may need as many as 50 units of blood and up to 25 units of platelets. Schedule a blood donation appointment today by visiting RedCrossBlood.org using the Blood Donor App or calling 1-800-RED-CROSS (1-800-733-2767).
Blood Donor Eligibility
A blood donor card or driver’s license or two other forms of identification are required at check-in. Individuals who are 17 years of age in most states (16 with parental consent where allowed by state law), weigh at least 110 pounds and are in generally good health may be eligible to donate blood. High school students and other donors 18 years of age and younger also must meet certain height and weight requirements.
Blood and platelet donors can save time at their next donation by using RapidPass® to complete their pre-donation reading and health history questionnaire online, on the day of their donation, before arriving at the blood drive. To get started, follow the instructions at RedCrossBlood.org/RapidPass or use the Blood Donor App.
Those who come to give blood Sept. 16-30 will get a $15 e-gift card to their merchant of choice. Visit RedCrossBlood.org/Fall for details.
About the American Red Cross:
The American Red Cross shelters, feeds and provides comfort to victims of disasters; supplies about 40% of the nation’s blood; teaches skills that save lives; distributes international humanitarian aid; and supports veterans, military members and their families. The Red Cross is a nonprofit organization that depends on volunteers and the generosity of the American public to deliver its mission. For more information, please visit redcross.org or CruzRojaAmericana.org, or follow us on social media.
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