Feature
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Here, in their own words, two women share the story of their remarkable relationship—and how Kiwanis brought them together |
By Mayra Perez
When Romina came to the Kiwanis Club of Key Biscayne, she was two years old. To have a doctor tell you she was not going to live past five or six years old—and to see her today—it’s a tremendous joy.
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Romina’s disease made life especially precarious during her toddler years. Average childhood bumps and falls caused devastation to the child’s delicate body.
During Christmastime, Kiwanians ensured Romina’s family holiday cheer.
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As Romina grew and understood more about her disease, she was able to protect herself, take care, and be a child.
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Romina is the daughter of the maintenance man for the building in which I have a client and in which the Kiwanis club has its office. The doctor who was seeing Romina came by one day to speak to me about the predicament the family was in: They were from Chile, and the child was born with epidermolysis bullosa (a rare, genetic disease that causes extremely fragile skin and blistering from even minor friction or trauma).
At the time, there were only two places in the world that would treat Romina: One was in New York; the other, in France. The family came to Miami to be closer to New York and get help.
When the doctor came to me, I actually said “no,” I could not help her, nor could the Kiwanis club. It was too big of a project. Too much. The next day, however, the doctor came back—this time with Romina and her father.
That was my first memory of Romina. She was wearing a frilly blue dress. She was very tiny, walking in on the hand of her father, and she had a smile from ear to ear. On her knees and hands were bandages, dressings her mother had placed over her wounds to protect her fragile skin.
The father told me his story: how he and his wife were teachers in Chile but in coming here, he had taken a job as a building maintenance person; his wife cleaning houses. They came because they wanted to help their daughter.
Well, when I came here from Cuba at age eight—with only my dad—people helped us. My mom was not allowed to leave Cuba with us, and some special women stepped in, to be like mothers to me. I always wanted to do the same, to pay back. I thought that if God had put those ladies in my life, the least I could do was the same.
I thought, “I have to help out, but how?”
I agreed to bring the family’s need to the club, and, when I did so, one of the members (Sergio Marti) took out his checkbook and said, “I am giving the first US$1,000 for this, Mayra.” Since then, we have been paying all Romina’s medical bills, including her medications and special bandages. We have sent her to New York three times for treatment, plus supported other medical trips and treatments.
We have had some close calls with Romina. When we first took her to New York, the doctor told me she would only have a couple years to live unless we could keep her alive. My heart was heavy. If we could keep her alive, the older she got, the better she would be able to understand her disease and take care of herself, improving her condition.
My big fear was that something might happen to Romina. When I went to the hospital with her and her parents, I put on the good, strong front; but one day, I went into the chapel to just cry. Romina’s anesthesiologist came in and held my hand for a while. That same doctor and I had had a major disagreement a year before, and at that moment, he told me Romina had taught him a lesson: to not judge people right away. He said he was glad he had met me—that I made a difference in his life!
Beyond finances and medical support, we’ve also given Romina things, such as a computer, to help her make something of herself. And we fought to get her in school. When she was finally allowed to attend, she was able to really “become a child.” We also adopted the whole family. We had to train the parents that Romina’s two older sisters had lives of their own and should not (be slighted) because of Romina’s illness.
One day, while we were in the hospital waiting for the doctor with Romina, her mom confided in me that it was one of the girls’ sweet 16 birthday, but the father did not want to do anything since the finances should go to Romina’s treatment. The father told me they could not even afford flowers.
Well, the women of the club got together and found someone to donate the music; I donated my house, and everyone donated food to host the best sweet 16 party ever. Since then, we’ve given scholarships to Romina’s sisters so they could go to college.
Now, here Romina is at age 18, going to college, and along with her sisters, on to great things in life because of Kiwanis. We call her Miss Congeniality and our 90-year-old child—because she is very savvy and she knows her disease very well. She is not cured, but she understands how to take care of herself. She has always been happy—with a big smile on her face—no matter what she was going through.
One of my best memories of Romina was when the Kiwanis club had a float in the July 4th parade. We made her a royal cape, I bought her a tiara, and she was our float queen. Romina was all smiles, and she waved to all the people.
Romina has taught me to thank God for my life and for the opportunity he has given me to help others. She’s taught me that sometimes the going is hard, but you get through it and live your life. She has taught me patience and strength. She has taught the Kiwanis Club of Key Biscayne courage, faith, and unconditional love. She has made us realize that being a Kiwanian is making a difference.
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“Mayra (posed with Romina) is like my second mother or my godmother. She’s always here to hear me out. When I am in pain or I need some kind of help—for my condition or otherwise—I know I can always count on her for anything. I’m so thankful for finding her. I couldn’t imagine what I would have done or been without her.”—Romina Krause
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Upon her graduation from high school, Romina wrote a letter to the editor of the Islander News, thanking Kiwanis among those who helped her become the person she is today. Romina is busy studying event planning at Miami Dade College.
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By Romina Krause
I was only two years old when I arrived in this country in my parent’s arms hoping to relieve the pain of my illness. I was lucky God led me to a group of generous people: the Kiwanis Club of Key Biscayne.
My earliest memory of my disease is from when I was around the age of six or seven. I had started first grade. Before then, I was home-schooled, and now (as I prepared to go to school with the other kids), my parents explained how I was more sensitive than other kids; how I had to be very careful when I walked and make sure I didn’t trip or hit myself. That’s when I came to understand my disease.
But I never really thought about it much. I was just living the life of a kid. I knew I couldn’t run or play tag, because I could get really hurt, but that never stopped me from enjoying my life. I never thought about what might happen. I just let things happen on their own; and if something came in the way, I would deal with it with a positive outlook.
My earliest memory of the Kiwanis club was around the age of 10, when I received a package of food and a turkey for Thanksgiving. That’s when my parents told me who the Kiwanians were—and how they’d helped us with so many things; such as one time when I had a blister on my lungs. I wasn’t able to swallow anything, and I was taken to the hospital. The Kiwanians were the ones who took care of everything.
Of course I now know the Kiwanians have been there for me since I have been in this country. They have been with me since age two! They have been through everything I have been through. They have helped me on any medical problem I’ve had.
But that’s not all: One of the biggest memories I have about the club is from one Christmas. I really wanted to ride a tricycle. I saw other kids riding them, so I wanted one too. And that Christmas, I had my very own tricycle! I know it’s such a little thing, but in my condition, it’s very hard for me to do some things. When I saw that tricycle, I felt like a “normal kid.”
In fact, without the Kiwanis club, I wouldn’t be myself! I love (the Kiwanians) with all my heart. They took me and my family in when we needed help the most. They are like my guardian angels. I have been able to get many surgeries done because of them: my teeth, my hands, my back, and knee. They also made me feel like I was a normal person. I have lived my teenage life as a normal teen: I can run, ice skate. …
Now, I’m attending Miami Dade College, pursuing my Associate’s degree with plans to transfer to Florida International University. I’m studying event planning for the entertainment business. I love the field of event planning, because you get to know new people and be involved with others. When I was younger, I was really shy and kept to myself. But as I grew older, I became more out-spoken and loved meeting new people.
The Kiwanis club made me the person I am today—always looking at the positive side and facing everything with a smile on my face and knowing that I have a great team watching over me. |
