Our son Mark Barabash passed away on January 22,2012. There are no words to describe the pain in losing a child. We never thought that Mark’s life would end this way. Since Mark is not here to share his story, we will be his voice.
We were an ordinary family. Two loving parents, with two most precious little kids. When we found out that we were pregnant for the second time, I don’t know who was most excited us, or our daughter Maria. Our Mark was born on October 18,2008 weighting at 9lb. 9 oz. This was one big, healthy, beautiful baby. We could not contain our joy and excitement.
We were living a beautiful dream. Little did we know at the time that our world was about to turn upside down. It happened one day in late December of 2011. We were about to leave on an out of town trip, and Mark was not feeling well. We were of course concerned. Mark’s pediatrician was contacted. He advised us to not cancel the trip, but if something should happen to go to the hospital. During the trip Mark began to experience diarrhea, vomiting, and his stomach swelled up. To be on a safe side we took him to Emergency Room. The attending physician informed us that this was just a stomach virus and nothing to worry about. We were sent home to get better. By the time we came back home from the trip, Mark’s condition had not improved. We went to our pediatrician immediately. As soon as Mark’s doctor saw him, he grew very concerned. Labs were drawn and all we could do was go home and wait, and wait we did.
When the phone call came, it hit us like a ton of bricks. It was the most terrifying news we could have heard. Our beautiful son was diagnosed with leukemia. Our doctor arranged for us to be admitted to Columbia University Hospital. We stayed there for six weeks, so that proper treatment could be established for Mark. By the time Mark left the hospital, our two year old son lost 13 pounds, lost his beautiful baby blond hair, muscle strength, but his spirit was stronger than ever.
Little by little Mark started gaining weight and flourishing at home with love and support from his family. We were going back to the hospital for treatments on an outpatient basis. Our life was finally getting back to what we called a new normal. Mark’s doctors were satisfied how he was responding to chemotherapy and radiation treatments. Although the treatments were brutal, our Mark remained strong.
Several months into the treatment it was announced that Mark was leukemia free. He still needed to continue his treatments for the time being to make sure that the cancer would not reoccur. Just as we were about to breathe a sigh of relief, our life was turned upside down once again. From that point on, however, there was no going back for us to normal.
It happened suddenly one day. Mark’s blood platelet count dropped to a dangerous numbers, it was almost non-existent. We were re-admitted to the hospital . By that time Mark was extremely sick. No one could figure out what was causing this and how to treat it. Several biopsies, CT-Scans , MRIs, spinal tabs were done. Mark’s doctors were at loss, all tests showed that he remained leukemia free and it did not spread anywhere. Only after several consultations with other specialists around the country were we given the most horrible news. Our precious boy developed two very rare and serious blood disorders called HLH and JXG. His labs showed that he did not fit entirely into the category to HLH or JXG diseases. This meant that there was no protocol on the proper treatment for Mark. Unfortunately and unbelievably to us and the doctors, our son was the only recorded child to develop these two diseases at the same time. There is no way to know for sure how this happened, but the doctors believe that mutation occurred in his body after receiving chemotherapy and radiation treatments to cure leukemia.
It is impossible for us to even begin to explain what Mark went through during his stay in the hospital, which he would never leave. There were so many MRIs, CT-Scans, blood withdrawals, blood transfusions, medications, chemotherapy and radiation treatments that we lost count. With all those treatments that Mark had to endure nothing helped, his blood labs did not improve. We were told that Mark’s last chance was going to be a bone marrow transplant. We were told from the beginning that in order for him to go through bone marrow transplant he will need to go through a very difficult chemotherapy treatment called conditioning. This treatment will kill his immune system completely that way his body would not reject the donor’s bone marrow. The doctors warned us that he might not make it through this treatment. When Mark was able to endure it with little side effects, his doctors called him a miracle child. However, we were also told that Mark’s chance of living through a bone marrow transplant was only ten percent. Of course ten percent comparing to one hundred percent is nothing, but ten percent comparing to zero is a lot. With prayers, fasting, we had a lot of hope that Mark was going to beat the odds.
After the bone marrow transplant, or what his doctors called his second birthday, our little hero lived for another 23 days. Unfortunately Mark’s condition got worse and it was discovered that he developed a serious infection. After three long surgeries our son was in critical condition. His little body could no longer fight. At the end he was so brave and left this world as an Angel on January 22, 2012 at approximately 5:35 am.
Today we still cannot understand why everything happened the way it did. We have no answers, just more questions. Why did this happen to our son, to us? We were a normal family just like every other family in this country. Our hearts are breaking. We had to bury our three year old boy, who celebrated his third birthday in a hospital.
It will take a long time, but with our families’ and friends’ support and love, we will heal. Mark is always with us in our hearts. From this devastating tragedy, Mark’s Angels Foundation was born. To honor our son, we made it our mission to help other families in similar circumstances, whose children are sick with cancer and rare blood disorders.
During his three short years on earth, our Angel has touched so many lives and he continues to do so even now.
With Love, Mark’s Angels.