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2007 - Sonja Natalia Stefanovic
(06.01.2006 - 06.01.2006)
Sonja's SMA Story
We waited 36 weeks and 4 days to say hello and all we got to say was goodbye. On January the 6th, 2006, the brief flash of life that was our baby girl, Sonja Natalia, was extinguished by a disease so insidious that none of the caregivers who had accompanied us on our journey suspected it was looming or even could recognize its mark. For thirty-five minutes she fought for life but never cried, never opened her eyes. The baby we had dreamed of, the life we had anticipated was, in an instant, gone. For several months we waited for the report that would tell us why. |
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From the first day we suspected our baby was coming to us we were reluctant to believe our wishes had, after over five years, finally been answered. All around us family and friends were warmed by her spirit and glowed as they spoke with anticipation of the child that was so deeply wanted. It seems everyone whose life Sonja touched changed as she influenced the world around her in subtle ways; people became kinder, more patient, and more generous, to each other and us. She reacted to the world around her, she responded to voices and foods and would dance and wiggle in the daytime to music her mother played for her and was considerate in sleeping through the night. Everything seemed to proceed normally and none suspected anything significant had changed when, at 26 weeks, Sonja performed an acrobatic shift in position and, thereafter, her movements gradually diminished; she was resting in a breach position. Although we were all blissfully unaware this point marked the beginning of Sonja's fight.
The following 8 weeks were marked by rising blood pressure and a dangerous increase in amniotic fluid. Finally, with her mother's kidneys failing, Sonja was delivered by emergency caesarean section, the procedure made more difficult when it was discovered that several of her joints were conjuncted and unable to bend. Her mother had accumulated six times the normal amount of amniotic fluid and the loss of muscle tone that took Sonja's ability to swallow also prevented her lungs from developing, leaving urgent attempts at resuscitation futile.
Our beautiful baby daughter died because of SMA (Type 1, onset in utero). This disease took her away from us but it will never take away the love we have for her or the joyful dreams for our lives together. Sonja had an incredible spirit and desire to live, just like all the other people with SMA. Even though she lived for only a short time outside of her mother Sonja's love and spirit has touched many. We knew that Sonja was meant to be and that she had purpose in this world; her purpose and voice have outlived her little body. Sonja's existence has helped to spread the word about SMA and will continue to do so. Information collected about her birth and from her autopsy will help in the research of this horrible killer. Sonja, like all the SMA angels, is part of our fight to help keep others from dying. She will do this by inspiring others to do their best to raise money for research and medical trials, spread awareness about SMA and fight the fight. |
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