From Toddlers To Teens, Inspired By Others With Lymphatic Malformations

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Last month we returned to Lenox Hill Hospital for Ostin’s second surgery. We had the pleasure of meeting little Nora, who instantly charmed us with her out going personality, adorable smile and abundance of love (blowing kisses to all)! Nora, her mom, Carrie, and grandma joined us in the playroom where we had an opportunity to share “our stories.” Nora is a 16 month old girl who was born with a lymphatic malformation, similar to Ostin’s. It is incredibly comforting to be with children and their families who can relate to your situation, discuss different treatment plans and explain where they are on their journey. Carrie really inspired us with her strong faith, extensive knowledge of this medical condition and great sense of humor! As Carrie describes on her blog,littlelightofminenora.blogspot.com, Nora’s name means “light” and she truly is the light in their loving family.

The month before, we had been sitting in the same playroom, when we had the good fortune of meeting a 16 year old girl, and her father. Her dad inquired about Ostin, wondering what type of diagnosis he had. We knew it was a “safe” environment and he was truly asking out of concern. When I responded, “he has a lymphatic malformation”, he turned to his beautiful daughter, and said, “so does she.” This articulate and poised young lady proceeded to share her experiences in a very factual, easy going manner. She had been born in Mexico and at the time of her birth, her father knew that something was “wrong.” Unfortunately, the doctors denied his insight and no treatment was offered. When she was two years old, the family traveled to the United States where medical care was available, and they settled into their new environment. It’s been a financial struggle for this family of five…the father works two jobs and can only afford health insurance for his children, not for his wife or himself. Yet, he never complained. Receiving medical care for his daughter was his priority, and he knew he was more fortunate than others.

We were grateful they are fluent in Spanish, and left Ostin’s mom, Karla, with them so they could have the opportunity to talk. They learned Karla and Ostin are from Honduras, and living with us while Ostin receives medical treatment. The father told me that Karla has the desire to learn English, and then quietly handed me $50.00, saying, “could you put this towards that?” At first I resisted, but looking in his eyes, I knew this was a gift from his heart.

True example of generosity…the person with the least, offering the most.

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