The family of a seven year old boy hopes to find someone of exactly the same origin for a transplant to save his life.
Asaya Bullock was diagnosed when he was born with IPEX syndrome, a rare condition that causes the immune system to attack the body's own tissues and organs.
In early childhood the disease can be life threatening.
As Asaya is of mixed race, there are very few donors who have a sufficient genetic match for his blood.
Now the Bullock family, from Parkchester, New York, are desperately looking for the match that could save their son's life.
Asaya Bullock, seven (photo) from Parkchester, New York, was diagnosed with a rare condition called IPEX syndrome when he was born
IPEX syndrome occurs because of a gene mutation that causes the immune system to attack the body's own tissues and organs. It is so rare that it only occurs in an estimated 1.6 million people. Pictured, left and right: Asaya
& # 39; It is a miracle that Asaya is still alive because the doctors have given him only two years to live, & # 39 ;, his mother, Charlene Bullock, told ABC. Good morning America.
& # 39; He was very sick and as parents we didn't know what was wrong with him. & # 39;
Immunodysregulation polyendocrinopathy enteropathy x-linked (IPEX) syndrome is a rare autoimmune disease that only affects men.
It occurs through mutations of the FOXP3 gene, which produces a protein that helps the cells of the immune system, called regulatory T cells, to function normally.
Mutations ensure that these T cells do not disable immune system responses, attacking body tissue and organs instead of forule invaders, such as viruses or bacteria.
Sufferers often have secondary disorders that affect the intestines, skin and endocrine glands – such as diabetes, diarrhea, eczema and anemia.
According to the National Institutes of Health, it affects an estimated one in 1.6 million people.
Doctors usually treat IPEX syndrome with drugs that limit the functioning of the immune system, which means that those with the disorder are susceptible to disease.
Asaya suffers from severe migraine and stomach and joint pain due to the condition. When he falls ill, he often misses school for several days. Pictured, left and right: Asaya and his younger sister, Anaya
The only known cure for the disease is a bone marrow transplant. Asaya & # 39; s parents cannot donate because they are West Indian Caribbean and African American. Pictured: Vincent and Charlene Bullock with their son Asaya (on Vincent's shoulders) and daughter Anaya
Charlene told me Bronx Times that Asaya suffers from severe migraine, stomach and joint pain and a forgetful memory.
He also often misses several days of school because, if he gets a cold or flu, it can take longer than a month.
The only known cure for the disease is a bone marrow transplant.
Bone marrow is the spongy tissue in bones where blood cells are made.
Transplants include taking the blood-forming cells from a donor and bringing them into the patient's bloodstream, where they begin to grow and make healthy red blood cells, white blood cells, and platelets.
Because the set of genes used to determine a match is related to ethnicity, patients are likely to find a match within their own ethnic group.
Charlene and Asaya's father, Vincent, cannot donate because they are West Indian Caribbean and African American respectively and their son is a mixed race.
When Asaya & # 39; s younger sister Anaya was born, his parents hoped that her cord blood could be a cure.
According to the Bronx Times, cord blood was a 70 percent agreement, but Asaya & # 39; s body rejected the cells.
Asaya & # 39; s parents hoped that his son's cord blood could be a cure. The cord blood had a 70 percent agreement, but Asaya & # 39; s body rejected the cells. Pictured: Asaya, in the hospital, playing cards
Of the seven million people on the national bone marrow register, only three percent identify themselves as a mixed race. Pictured: Vincent and Charlene Bullock with their son Asaya (detained by Vincent) and daughter Anaya
The Fred Hutchinson Cancer Research Center states that 70 percent of patients who need a bone marrow transplant do not have a matching donor in their family.
Of the seven million people in the national bone marrow registry, only three percent identify themselves as mixed breeds. Depending on your race, your chances of finding an unrelated donor vary greatly:
- Caucasian patients find a donor about 75 percent of the time
- Spanish patients find a donor about 45 percent of the time
- Asian patients find a donor about 40 percent of the time
- African-American patients find a donor about 25 percent of the time
The Bullock family has since turned to the Be the Match Registry – the national marrow donor program – hoping to find a donor.
& # 39; I would say it to (donors): & # 39; You are saving a life. & # 39; There is only one in a million that you could possibly call a match, & # 39; Charlene told Good Morning America.
& # 39; At least you know in your heart that if you are called and you are a party to someone, you have saved a life. We all have to look out for each other. & # 39;
- For more information about how to register as a bone marrow donor, visit Be The Match
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