Journey with Leia
Anyone who is a parent understands the overwhelming fear that comes with their child’s health being placed in jeopardy. For Marco and Shonna Fallico, their world has been turned upside down with the recent diagnosis their beautiful three-year-old daughter Leia Luna Fallico has received.
Leia has been diagnosed with Dyskeratosis Congenita, a rare genetic form of bone marrow failure. Due to the severity of the condition, Leia is in need of a bone marrow transplant, but because of her mixed ethnicity, made up of both Middle Eastern and European descent, the probability of matching her with a donor is significantly more difficult.
As we continue to follow Leia’s journey to finding a donor match, we encourage our readers to take a moment to read the open letter written by Leia’s mother, Shonna Fallico.
The recent rare genetic diagnosis of our daughter, Leia Fallico, shook us to our core, but it also sparked our interest.
What is Dyskeratosis Congenita? And, how can we get a research team together working on how to cure this? We had so many questions. We contacted so many doctors. We read so many medical journals.
I think, for the first two months, we were in denial about the diagnosis. We did not see that she presented most of what we read. “This can’t be true,” we thought. She was such a happy baby, got sick like normal children, healed on her own, never had an infection. We just could not believe this could be her fate.
We started seeing a hematologist in March at Toronto’s Hospital for Sick Children every two weeks for blood work. We saw her hemoglobin, platelets and neutrophils dropping, slowly but surely. We didn’t want this to be true, but it was happening.
Bone marrow failure is a result of this condition, and in most cases, it is a definite outcome. It hit home when Leia needed her first blood transfusion two weeks ago because her hemoglobin went down to dangerous levels. Even at that low level, our daughter still had energy and was smiling and playing. Leia is a fighter! Her strength and determination are incredibly admirable. She has a big spirit, and nothing will stop her.
Leia can only have so many blood transfusions until she can’t anymore because they can only do so many before that starts to have negative effects and causes too much iron in the body that cannot be excreted out.
When Leia had her bone marrow biopsy to see at what level it’s functioning, we were told that hers was at a much lower level than the average child and that it would continue to drop until she has a bone marrow transplant. That same day, we received the news that Leia had no matches in the registry because of how unique her genetic makeup was. Leia is of mixed ethnicity – Italian, Persian, Irish and Scottish. Sadly, only 3.5% of the Canadian Blood Services’ Stem Cell Registry’s donors are of mixed ethnicity. That is a scary percentage, especially when we are going through this with our daughter and for anyone else out there who is of mixed race looking for a bone marrow transplant.
My family and I are urging anyone between the ages of 17 and 35, who are of mixed ethnicity, to please register and become a potential life-saving donor to our beautiful daughter, Leia. She deserves a chance! Please register today.
We thank you so much and pray Leia finds her match.
The Fallico Family