Dr. Iyabo Daramola stands in extraordinary optimism as she begins the search for the person that can save her son Xavier’s life. Her only child has been diagnosed with a life-threatening condition, Aplastic Anemia (AA), a rare disorder in which the bone marrow fails to make enough blood cells.
The condition arose after his unexpected diagnosis of acute liver failure back in September 2012. “This hit us out of the blue. Our son has never missed school for being sick and has only ever gone to the hospital for immunization shots. So to hear that he was suffering from acute liver failure was a complete shock.” says his mother, an Adult Internal Medicine M.D. at Caring Hearts Medical Clinic.
Xavier spent the next 45 days of his life in the hospital between Rady’s Children’s Hospital San Diego and Mattel Children’s Hospital UCLA. During his stay, he acquired an infection and remained under 24-hour surveillance. At this time, a bone marrow biopsy confirmed that Xavier had Aplastic Anemia.
“Our lives have been turned upside down by this. This is hard for any parent to go through; not knowing what the outcome will be. You know, whether your child will make it or not. People never know how they will react until a scare hits home.” shares Iyabo.
Aplastic Anemia can be genetic but most often appears as a result of an existing illness in the body. The bone marrow is responsible for the production of the blood cells. When the white blood cells are low, the AA patient is at a high risk of infection or illness. When the red blood cells are low, there isn’t enough oxygen flowing through the blood stream and risk of heart failure is great.
Furthermore, AA patients must minimize their possibility of catching colds or even hurting themselves and causing unnecessary bleeding which can lead to infection and even death. For example, if a child plays, falls and hits his head, then he could potentially die from inter-cranial bleeding. Some patients can’t even eat chips because hemorrhaging can occur in the mouth. In order to maintain a reasonable blood cell count, Xavier receives weekly blood work, bi-monthly transfusions and ingests up to 20 pills a day.
“Xavier is a very tough little boy. He has an internal strength that most of my adult patients don’t have. My husband and I infused in him to look at the glass half full. He knows that there’s a chance that he can be healed and with that he lives a happy life.” Iyabo draws strength from her son, mentioning that when she comes home from a 12-15 hour day at her private practice, Xavier insists on serving her and running her errands. “I have to remind him not to physically exhaust himself trying to help me. He’s such a social butterfly and truly enjoys helping other people. I am so happy he is my son.”
The English-French bilingual student’s uncanny perspective on his condition serves as inspiration to those around him. He is a celebrity in his own right at Rady’s Children’s Hospital and he’s even on a first name basis with the nurses. His classmates and teachers express their heartfelt well wishes and look forward to the day he returns to school. The posture of faith his mother refers to exudes in his one-minute YouTube video request for prospective donors. Xavier is a resilient 4th grader focused on one thing – getting better so he can go on a Disney Cruise with his family.
The Make a Wish Foundation recently dropped by the Daramola household to shower Xavier with encouragement and of course, grant him a wish. He offered up his wishes for a backyard pool and an intercontinental flight to China. Xavier didn’t particularly care to meet anyone famous but excitedly shared his dream of one day becoming a builder. “I want to build the longest toy train track in history!” boasts the 9 year-old who happens to love all subjects in school.
Doctors say the likelihood of matching bone marrow is higher if the donor is from the same ethnic group. For Xavier, that would be Nigerian. “So far we haven’t gone out to a lot of African American groups but the Nigerian community is very receptive. We are at the beginning of our donor search. So far we have over 20 potential donors.” Likely donors must be between the ages of 18-44, have no major medical problems such as, lung or liver disease, diabetes, any forms of cancer, infections, anemia or auto immune disease.
The process is very simple. To get tested, potential donors will need to send in swabs taken from the inside of their cheeks to the National Marrow Donor Program. If they are a match for Xavier, they will be asked to donate stem cells. Stem cells are collected much like a blood donation. The donor will be seated in a comfortable room while blood is collected from him/her, the cells will be filtered, stem cells collected and the blood returned back to the donor. The process is virtually painless and will take a few hours.
“If we don’t find a match, then we will keep doing what we are doing — the weekly check-ups and the bi-monthly transfusions. If we do find a match, then the bone marrow transplant should cure his Aplastic Anemia. Then we can rest. ” Iyabo confidently states.
To learn more about how you can help Xavier, please visit www.bethematch.org and type in code, “Xavier”. Here you will get to know a little more about Xavier and how you can send in a sample to see if you’re a donor match.
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