Testimonies

" "When I found out that my daughter had Rokitansky Syndrome, the news not only brought a whirlwind of emotions but also many doubts. I sought information from the best doctors, psychologists, psychiatrists, but the answers were very basic, without any explanation that gave me confidence to help her through this unsettling time, at a stage where doubts are already an intrinsic part of adolescence. For us, parents, love never changes, but the need to see less pain in my daughter made me search for more answers. That is how I met the organization Beautiful You and the MRKH Conference in Boston. I found medical answers and a lot of emotional support for the girls, parents, and family members. When I returned to Brazil, loneliness, anguish, and doubts no longer took over my life, and the urgent need to make my daughter feel that peace - which I felt when I received that support - brought the idea of helping other families in the same situation, to deal with their emotions and reactions to this new reality. Thus, together with Isabella and Claudia, my partners, we have made it possible to create the Roki Institute, in order to answer all your questions, concerns, and, most importantly, to welcome you with great affection! To you, my daughter Isabella, your father and I dedicate this Institute; we are very proud of the way you have faced this obstacle in your life, of the woman you have become, and of the courage you have had by turning pain into love for others!" "

" I have five children, four sons and a daughter. I always dreamed of being a mother, so I feel very fulfilled. In fact, my desire was to have seven children. When my only daughter was born, who was eagerly awaited as I already had three boys, the joy was immense. Her name is Claudia. Claudia has always been a beautiful, intelligent, communicative, and very cheerful girl. We talked a lot about when her first period would come, because I always considered it a very important stage in a woman's life as she blossoms into adulthood. I even bought a very cute pad holder, so that she wouldn't be caught off guard by her first period if she was away from home and unprepared. Time passed... Since I had my first period at 11, I thought she would also have hers around that age. But her period didn't come... and I justified it by thinking that it was because she was of European descent and was a tall girl for her age by Brazilian standards. But at 13, we took her to a doctor who was our friend and had delivered her, when she was born. He examined her externally and suggested that we took her to another doctor. So, we went to Unicamp, and they found she did not have a uterus. I was stunned!!! I didn't even know that this could exist... I was very distraught and frustrated, and for over a week, I couldn't think of anything else... I cried in secret because I did not want my daughter to see and feel my suffering. I cried in the bathroom or elsewhere, always away from her. When I looked at my daughter's innocent face, I suffered even more because I imagined that she really did not know the full extent of what was happening and all the implications and consequences it would have in her young life. Nothing like one day after the other to strengthen us while facing life's challenges.
Until that moment, we knew nothing about the syndrome. We were happy to learn that she had ovaries, ovulated, and that her hormones were normal. Time passed... And she became more grown-up and beautiful. She went to study medicine in São Paulo, and at 20, she learned about the other problems associated with the syndrome, including having to dilate her vagina. I know how difficult that phase was for her.
She was in São Paulo, far from me... and I suffered alongside her.
But what encouraged me was to realize what a strong warrior, and courageous my daughter was in the face of life and its numerous problems, despite her fragilities. She always tried to convey the image of being fearless facing adversity, but I know it must have been a great effort she made. My husband and I tried to follow all the difficulties she went through, and there were many...
Her four brothers, who are also doctors, always gave her all their support and love. That's when an idea started to haunt me. I wanted to be the surrogate mother of my future grandson or granddaughter. At that time, this process had barely begun. As I always loved being pregnant, I consulted my gynecologist, and around the age of 45, I told him that I wanted to continue menstruating to preserve my uterus for new motherhood.
Since I was in good health, he prescribed hormones, and I menstruated until I was 65 years old. But unfortunately, my daughter did not accept my offer for several reasons. I still do not agree with it until today because I could have fulfilled my dream, and she could have fulfilled hers.
Claudia has achieved professional and personal fulfillment, but it took a lot of courage and determination to overcome the obstacles. I believe that God strengthened and blessed us.
Today, through the Roki Institute, I realize that she has the opportunity to help other girls, women, and families who go through this issue. May God protect the Roki Institute and may it be of great value to help those who live and deal with the discovery of the syndrome. "

" From Mother to Mothers
Suddenly, the ground disappears! Life laughs, but not at you anymore, but rather from you. Rokitansky what??? It takes a while to process not only that strange name but especially the information that it is possible for someone to be born without a uterus. What do you mean, without a vagina too? But it's there! My God! Your heart races, your mouth goes dry, you think you're going to faint, but you cannot now. Calm down! Breathe! She needs you! For a long time, I repeated this silently to myself to compose myself from the many crying spells. I felt like I had been placed inside a bag that someone was hitting from side to side, shattering me until I almost turned to dust. It was as if that giant Tsunami wave had hit me head-on and I had fallen there, without strength, covered with mud. It hurt so much that sometimes I felt guilty for suffering that way. How many times did I feel ashamed of my fragility, while my much younger daughter, with far fewer resources, seemed to be dealing with all of it with much more dignity and strength than I was. I imagine that the impact of this diagnosis is absorbed in a unique way for us, mothers. I suppose it is due to our maternal nature to protect "the young ones." It's almost automatic, creating the most terrible scenarios to anticipate possible dangers, anxieties, and sufferings in an insane and futile attempt to prevent them from actually happening. When something as unimaginable as this syndrome appears before us, we discover in fact, rubbing our faces on the asphalt, that we know absolutely nothing and have no control. Curiously, it is precisely at this moment that our great chance to learn to be happy with all the countless and profound possibilities of this word is born, still as a seed. I call it a seed because it needs time. There are many phases, and each one has its own rhythm and challenge. At first, the more you strive for information, the more fears and questions arise. And they almost always terrify us with the possibility of the answers. It's almost like dominoes. Will she be able to have children? Will she be able to have a normal sexual life? Will she be depressed? Will she want to kill herself? Will she get into drugs? Alcohol? Will she suffer prejudice? Who will take care of her when she is older? A mother's mind is anxious and creative, not always in the best direction. So when a new question haunts you, remember: We control nothing! Learn to "surf." When there is a Tsunami, embrace your pain, hold it in your arms, and allow yourself to feel it. You have that right. Sadness is necessary to honor our joy. When the sea is rough, face the challenges as they arise, with all the learning and accomplishments that they bring. And when the sea is calm, don't be in a hurry, enjoy and bathe in it for a long time. But always, in a rough or calm sea, live one day at a time. Finally, during my journey as the mother of a wonderful daughter, it was written in one of the chapters: Rokitansky. I imagined many things, but not that we would both be so well and that the syndrome would be one among the many significant events in our history, mine and hers. I don't forget the phrase from one of the wonderful professionals who helped us in this process. It is with her phrase that I end and repeat to other mothers' hearts: "Calm down! It may not be as bad as it seems." "