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Emmanuel "Manny" Johnson, 21, of Brockton, was the first patient to participate in a new clinical trial on sickle cell disease at the Dana-Farber / Boston Children's Cancer and Blood Disease Treatment Center. He takes the risk for his little brother the same disease.
Johnson has described as "normal thing" five weeks a month at the hospital to receive a blood transfusion. He had received blood transfusions since the age of 4, after sickle cell disease caused him two mild strokes. .
Now, Johnson has not received a transfusion for nine months, thanks to the clinical trial.
The test was not easy, but Johnson chose to stay in shape: his brother Aiden, 7, who also suffers from sickle cell disease.
"It's not just that we share the same blood disease, it's like I have to do better for him," said Manny.
"I do not really like sickle cell disease," said Aiden, who is also a patient at Boston Children's Hospital who regularly checks her blood.
Manny did not hesitate when the researchers asked her to participate in the "switch on" test on red blood cells, turning them into healthy cells through gene therapy.
His parents, however, were not as impatient as Manny.
"It's annoying as a parent, you know? You cry, you pray, "said Emmanuel Johnson, Manny's father. "They even said that he could not do it."
Manny was hospitalized for a month and received chemotherapy treatment to remove Manny's stem cells and genetically modify them before replacing them in his body by infusion.
"I really got sick. … I stopped eating for two weeks. I could not eat or drink, it was difficult. My skin began to darken, I had mucositis, my vision began to be impaired and then I lost my hair, "Manny said.
Dr. Erica Esrick, co-principal investigator of the clinical trial, said that despite the difficult side effects of chemotherapy, Manny was an excellent patient.
"He is brave enough to participate in a time-consuming research trial that is an innovative therapy," said Esrick, who added that Manny's hemoglobin levels are excellent.
Latanya Johnson, Manny's mother, said, "He was very strong and I found it incredible." She told the Herald that Manny had never complained during the trial.
Manny does not suffer from symptoms and starts playing basketball and video games again with Aiden at home in Brockton, where family photos decorate a comfortable lounge and their Chihuahua mix, Chase, runs by. A large bag filled with stuffed animals sits on the floor, persistently reminding of the generous gifts that Manny received during his stay at the hospital.
"I am moved because my brother cares about me and I always respect him because he will show me that it is right to do what you want," Aiden said.
Manny has a tattoo with the name of Aiden written inside a sickle cell awareness ribbon that he proudly shows to anyone who asks him.
Manny will follow up at the hospital with regular blood tests, tests and immunization.
The clinical trial has already enrolled more patients and will soon expand to adolescent patients with sickle cell anemia.
"It's a dream come true for me. Hopefully this can be an open door for many other children and adults who are seeking a cure, looking for that life-changing factor – and that's what the trial has done for me, it's a life that has changed Said Manny.
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