The only known cure is a bone marrow transplant.
The best chance for a successful recovery is getting a match to Connor’s own DNA.
The exact match will most likely come from another Korean or Asian Pacific Islander.
But, there are only 68,000 Koreans registered on the national registry.... and none of them are a match... yet.
What is bone marrow?
Bone marrow is the spongy tissue found inside of bones. Marrow produces the body's white and red blood cells and platelets.
What is a marrow transplant?
A marrow transplant replaces a person’s unhealthy blood-forming stem cells with healthy ones. The cells used in transplants can come from one of three sources (determined by the transplant doctor):
1. Bloodstream (also called peripheral blood stem cell or PBSC transplants) - most common approach used 70% of the time
2. Bone marrow
3. Blood collected from an umbilical cord after a baby is born
There are three different types of bone marrow transplants:
1. autologous transplant - A transplant using a patient’s own cells. Cells are collected from the patient’s bloodstream (or, less often, from their
marrow) and stored for the transplant.
2. allogeneic transplant - A transplant using cells from a family member, unrelated donor or cord blood.
3. syngeneic transplant - A transplant using cells from an identical twin
Why do patients get a marrow transplant?
Marrow transplants can be used to treat patients with life-threatening blood, immune system or genetic disorders. It’s most widely known as a treatment option for patients with leukemia. In Connor’s case, he was born with a rare genetic disorder which prevents his body from producing enough antibodies to fight off infections. He needs to replace his current immune system with a new one produced from the blood forming cells he would receive from a donor.
What are the basic registration requirements to join the National Marrow Donor Program (aka Be The Match Registry)?
You have to be between 18 and 60
Be in overall good health and meet the medical guidelines (details outlined when you go through the registration process)
Live in the US or Puerto Rico. (International donor centers exist. Please do an online search to find yours)
I am not in the US Military (if so, click here)
You are willing to donate to any patient in need and understand the donation process (outlined in the registration process)
What if I want to register, but I live in Korea?
There is a separate donor center in Korea. The information is below. Please register! We can access most international donor centers' lists, including the one below. So you will still be helping Connor.
Seoul Red Cross Hospital
2-2 Gyonam-dong, Jongno-Gu
110-100 Seoul
Korea, Republic of
What is the transplant process for a patient?
The patient may be given chemotherapy, sometimes along with radiation therapy. This is called a preparative regimen or a conditioning regimen. The standard transplant uses a very strong treatment that destroys the patient’s diseased cells. It also destroys his/her immune system so it will not attack the donated cells. This treatment is too harsh for some patients who are older or have certain health problems. For these patients a reduced-intensity transplant, which uses a less harsh preparative regimen, may be an option.
After the preparative regimen, blood-forming cells are given to the patient (infused) through a tube or central line that goes into a vein in the chest. (One of the most common central lines is called a Hickman catheter.) The transplanted cells move into the spaces inside the patient’s bones where they create new marrow. They grow and make healthy new red blood cells, white blood cells and platelets.
Red blood cells carry oxygen to all parts of the body.
White blood cells help the body fight infection.
Platelets help control bleeding.
When the transplanted cells begin to grow and make new blood cells, this is called engraftment.
How are donors identified as a potential match?
The short answer: HLA. Human leukocyte antigens (HLA) are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close HLA match between patient and donor is the most important factor in selecting the best bone marrow donor for a patient.
There are many HLA markers, but matching only a small number of them is critical to a successful transplant.
The National Bone Marrow Registry tests most new members for 6 HLA markers when they join the Be The Match Registry. By testing for a basic level of HLA markers, tissue-typing costs are kept low — we want to be able to add as many registry members as possible to help all searching patients find a matching donor.
A patient’s doctor usually tries to select several potential donors who appear to match the patient at a basic level from the registry. The doctor then asks for additional testing to find a donor who matches the patient at a detailed level
What are the different bone marrow donation methods?
There are 3 different donation methods (read the next FAQ for additional details)
1. bone marrow – surgical procedure to extract marrow from the donor’s pelvic bone. Adults donors use this method 30% of the time.
2. peripheral blood stem cell – non-surgical procedure where blood is drawn from a needle and then the blood forming cells are extracted with the remaining blood returned to the donor. Adults donors use this method 70% of the time.
3. cord blood donation – blood forming cells are extracted from the umbilical cord of a newborn.
How are bone marrow and peripheral blood stem cell (PBSC) donation different?
Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone. Most donors go home the same day or next morning after surgery. The majority of donors (>98.5%) feel completely recovered within several weeks.
PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
Will donating marrow make me weak?
The amount of marrow donated will not weaken your own body or immune system. The average amount of marrow and blood donated is about one quart, less if the patient is a baby or child. This is only a fraction of your total marrow. Most donors are back to their usual routine in a few days, and your marrow naturally replaces itself within four to six weeks.
FAQs from www.marrow.org