A Matter of Life: 19-month Maria suffers from the rare Berdon Syndrome

The 19-month-old Maria-Efremia is still fighting a tough battle for her life. From the day of her birth until today she has known the hard, pain-filled side of life with dozens of hospitalization surgeries and experimental treatments that sometimes pay off and sometimes do not.

Maria-Efremia was born prematurely - 33 weeks and 5 days - and was diagnosed with an extremely rare syndrome called MMIHS (Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome or Berdon Syndrome)

It is a disorder that proper functioning of thestomach, intestines , kidneys and bladder.

Specifically, as far asMaria-Efremia is concerned , there is no peristalsis in the bladder and small intestine. As a result,Maria-Efremia cannot be fed normally.

To date she has undergone 12 surgeries, getting ready for the 13^th soon,with more to follow. Unfortunately, TPN ( Total Parenteral Nutrition) is the only way of feeding,that in the long run may affectthe functioning of the organ and may require multiple transplants.

Moreover , she is veryvulnerableto infections which subsequently require emergency hospitalizations.

The daily needs of Maria-Efremia require the constant presence of a person 24 hours a day to take care of her and provide her with the hospitalization at home. Therefore her mother was forced to quit her job, something that cost the family even more,as it is a constant and unpredictable struggle and they are now in a very difficult position unable to meet the high costs of medical bills

Her family believes in the strength of their little hero Maria-Efremia,their faith in God and of course in the precious help of the world in order to offer little Maria-Efremia a chance to live.