However, because of his illness, going out to the streets and in the crowds of people has posed a serious threat to lethal infections, and Hawkins accepted this as a reality Ja & # 39; Ceon – still.
Christine Simpson, like any mother, would want her child, Omarion Jordan, to grow into a healthy boy who could go out and not risk a serious illness.
Now, she says, he can.
Because of Hollywood's passion for this disorder, many people may think of SCID as a disease noted in 1976 by John Travolta's "The Boy in a Plastic Bubble" movie, or the All-All, 2017 film, featuring Amanda Stenberg.
Now it turns out that there is another way of treating the disease – and doctors call this new therapy "treatment".
A team led by researchers at the St.Jude Hospital in Memphis has developed experimental gene therapy, which includes the collection of SCT-X1 baby bone marrow stem cells by inserting a normal gene that is absent from these patients into these cells, and then injected them back into the baby so that the cells re-settled and restored the immune system.
It is difficult to b • lifting eyebrows in a medical field
"I felt the complete restoration of the immune system, which made it possible for these children to get out of isolation," he said. "So, we believe that at this time we are confident that this treatment. Only time will tell if it will be a solid, life-long treatment."
Both Ja & # 39; Ceon and Omarion took part in a clinical trial for therapy testing, and this proved to be successful in the treatment of SCID-X1 in both.
including T- Cells, B cells and NK cells
"We will continue to monitor these patients, but the results are only that these patients have complete immunity restoration without immediate side effects," Mamkarc said.
"Since this therapy is still in the early stages of development, until it is too early to evaluate the general but we want it to be affordable for any child who needs it, "she said." Most patients need only one infusion, and since we were able to fully restore their immune system, they did not need additional treatments as in transplantation. "
When JaCheon Golden was born in New Mexico in 2016, he never had the opportunity to return home from the hospital. His newborn screening tests have shown that he has a SCID-X1. When the doctors told his aunt, Danny Hawkins, about his test results, she did not know what to think.
"I was like this:" Well, what is it? "And their answer was to me:" Well, have you ever seen the movie "The Boy in the Bubble"? And I was such, "yes," and they said, "Well, that's what he has." At this moment, all my stuff passed through my mind, "Hawkins said with CNN alone.
Hawkins, guardian Jaa Keon, learned more about the mess and how to care for I'm Keon while he was in a hospital, including a permanent washing hands so as not to expose him to the microbes and heat the water in front of his baths so that the water is sterile.
The doctors then told Hawkins that she could go to San Francisco to receive treatment for Ja & # 39; Ceon, and she was informed of a study for a new gene therapy.
In 2017 The year when in San Francisco JaChawn was treated for his illness. As soon as Hawkins heard that the treatment was successful, she first took Ja & # 39; Ceon outside the window and things like that, because I would put he was up to the window of the hospital so he could see people walking and the cars are going, "she said. "Just to see him looking at the car and just a smile, it was a blessing."
In the following days, Hawkins was still nervous about the fact that the immune system of her nephew was completely restored.
"I still had this fear that if he got sick?" You know, because he never left the hospital before, "she said.
Then – we went to the Giants game, and his immune system could cope with it, with all the people who were there, and then I realized that it worked, "she said.
During the game, Hawkins took Joe Keona, a baseball fan, to meet Barry Bonds, a former star-player in San Francisco. In addition to Hawkins and a medical specialist, he was the first person to be held by Ja & # 39; Ceon.
"He never knew the state of I'm Keon, because that's not what I talked to him, but he had to keep it, and we took him," said Hawkins, "it was the third Day of leaving the hospital.
"I really prayed for a miracle, and I think it happened"
As for Omarion Jordan, he is now a loving, happy and healthy baby with a golden fish – but this was not always the case.
When Omarion was born almost a year ago in the state of Indiana states did not test newborns for SCID, and his seven did not know about his condition. As a baby, he often encountered health problems such as rashes or scaly patches on the skin, but nobody knew why.
"They probably guessed that it was not like they told me he had a cradle, he had eczema, he had an allergy to milk," said his mother, Christine Simpson.
"I just felt that nobody took me seriously, and that it was much more serious than anyone who gave it," she said. .
Once Simpson was enough. She took her son to see her primary pediatrician, who then sent Omarion to a neighboring hospital.
At the hospital, "they said he had pneumonia, he had a viral infection, he had a fever, it was difficult for him to breathe, and they just continued to do more and more tests," Simpson said. [Then I remember how they told me he had a cross-sickness sick of X.] Omarion was at the age of about 3 months, and Simpson had never heard of this disorder.
Once Omarion was diagnosed, Simpson and his doctors make efforts not to expose him to any microbes, and he was not allowed to go out into the street for months. He was then enrolled in a study for new gene therapy.
After that, Simpson was informed that her son was successfully treated.
"By entering into this, I honestly expected the worst," she said. ] "I really prayed for a miracle, and I think it happened. I do not think it's something like that miracle," she said. "As soon as we learned that he was cured, he actually snorted, and we woke him to take him outside, and then we were all out on the street until he fell asleep."
Next for gene therapy
Ja & # 39; Ceon and Omarion were two of the eight infants of patients who were involved in a new study. Patients who were middle-aged 3½ months and recently diagnosed with SCID-X1 were treated with gene therapy. The therapy included collecting stem cells from their bone marrow and then using the virus as a vector to insert a healthy copy of the IL2RG gene into the patient's cells before putting these cells back into their bodies. "The process takes about 10 days," she said.
"Before correctional gene stem cells were injected back into patients, the children received two days of low dose bosulfan, which was the most commonly used chemo-therapeutic agent. In bone marrow transplantation, to make space in the bone marrow for stem-cell stem cells The result was really outstanding for our patients, "said Mamkarz
"The goal is to prevent the unintended occurrence of leukemia in gene therapy," he said.
All patients survived the treatment and went well on average 16.4 months after treatment, according to a study. Additional studies are needed to determine if the effects will continue when patients become older.
Researchers explore how this gene therapy can be used to treat elderly patients and other types of diseases.
For example, "the same vector that was made here in Saint-Jude is currently used by the National Institutes of Public Health for the treatment of older children who have failed bone marrow transplantation," Mamkarc said.
"We are investigating other immunodeficiencies, but this vector can also be potentially used to treat sickle cell disease, which is a life-threatening disorder of blood that is very common throughout the world," she said.