SAMUEL MABEUS, (deceased)

Patient with Trisomy 13

Severna Park, MD

    My name is Mary Mabeus, I was, and I still am the proud mother of a very special little boy named Samuel. At the age of 32, I was young and healthy with 3 other children at home. I had no reason to believe I would have a child with special needs. Diagnosed with Trisomy 13 Mosaic at 18 weeks into the pregnancy, we were given no hope and were told our son would be “incompatible with life”. We chose to continue the pregnancy in spite of the poor prognosis.

   Samuel was born on July 17, 2006 and little did we know that he would continue to bless our lives for the next 19 ½ months. He was a true joy and proved himself to be much more than a diagnosis. He taught us love beyond our comprehension. Samuel loved to blow kisses to everyone. He loved music and water; he had a smile that shined! Samuel had no medical issues until he was 13 months old, in which he began to have seizures. He then began having feeding difficulties which required a feeding tube at 17 months and then respiratory issues which required a tracheotomy at 18 months. In fact the pulmonologist pleaded with me to have the tracheotomy done to give my son more quality of life. He asked me not just as a doctor, but as a parent himself.  As each issue arose, we were able to get immediate medical care for our son. Even if he had a fever, I could call the pediatrician while I was already on the way to his office. We were fortunate to have a wonderful team of doctors and specialists that always gave him immediate care when needed, which I am very grateful for.

   I am 100 percent certain that children like my Samuel will not survive in a socialized health care system. As a mother of a child with medical needs, I can assure you that when a medical issue arises, there is absolutely no waiting and it’s imperative to be seen by the appropriate specialist. It can be a matter of life or death for the child. I am confident I would not have had the 19 ½ months with my son that I was able to have, if we were under a universal health care plan.

   I stand before you today, as not only a mother, but as a voice for the families of children with special needs in this country. That they are given the chance to receive the medical care they need, and that “time” will not be stolen from them and their families who love them so very much, because of the inability to obtain prompt medical care under the proposed healthcare plan. Thank you.

-MARY MABEUS, mom of Samuel