Taken from a letter written by Omar’s mom, Mara:
Sickle Cell Disease, a life-threatening, debilitating, inherited disease brought us to Ronald McDonald House. My child, Omar, was diagnosed with it at birth. For 14 years, we have been suffering from the consequences of living with such a terrible disease. It was during the Fall of 2021, when we met the Bone Marrow Transplant doctors at Yale, that our prayers were answered. Omar was accepted into the transplant program and we were elated to know that he would finally be cured of Sickle Cell Disease.
Although we understood as a family that this was something that must be done - sacrificing jobs, family life, and our living conditions; we had concerns as to how we could do it. Where would we live? How would we maintain our home in Boston while living in Connecticut for three months? It was then that the Bone Marrow Transplant social worker proposed we stay at the Ronald McDonald House. She indicated it was right across the street from the hospital and we would have a place to sleep while caring for Omar during chemotherapy infusion and post-transplant.
I had heard of the House before; I had seen commercials about their charitable work and how they supported traveling families seeking medical care by providing a home during this time. I never thought I, in my adult years, would come to need their generosity and support.
Since Omar started the transplant course over the summer, RMH made it possible for my family to remain together during the conditioning period of the transplant. My husband and daughter were able to stay with us for a few weeks. The House provided a place for us to take breaks while providing care for Omar. We had a comfortable bed to sleep in, to counter the hard cots at the hospital. We also had warm meals prepared by volunteers that we could eat when we were too exhausted to prepare our own.
By far, the best part of RMH is the staff. The house managers became family when I was so far away from my own. They've given me hugs when I needed them and took the time to listen to our existential concerns and fears around undergoing such an important process as stem cell transplantation.
Things would have been very different for us if we didn’t have Ronald McDonald House. We would have gone into heavy debt paying for two homes at the same time. We wouldn't have had the opportunity to be close to an outlet of respite and reprieve from the hospital. We would have never met the incredible staff that supported each member of our family during our stay.
Not only were we supported, but my children as well. Omar, while in the hospital, would receive LEGO gifts that would keep him entertained for hours and distracted from the pain.
RMH has been an integral part of this experience. We have found support away from home and look to build on those relationships. I know that once we are back to our regular lives, we will do anything within our power to support the House and help ensure that RMH is there to support other families like ours.