Special Needs: When Research is Your Only Hope
There is no doubt about it. Sharon Fiedler-Shimanovsky is a warrior woman. Just six years ago, she was happily raising her infant son, Miles, with her husband Boris Shimanovsky. Elated to find out she was pregnant with her second child, Sharon had family, friends, career, and home–everything had fallen into place.
But then came a shocker that kept Sharon and Boris in the wringer for the next 3 years. She was diagnosed with Stage III, triple negative breast cancer during her 10th week of pregnancy. She made the choice to take the greatest risk and fight for her unborn child, her life, and her family. She and the baby made it through chemo and his delivery. Sharon underwent additional chemo, major surgeries and radiation intended to head off any risk of further malignancies.
As life returned to a new normal, Sharon and Boris were told it was unlikely she would bear children again. But no sooner than she could once again adjust her life-plan, Sharon got a big surprise: she was pregnant, with a much wanted baby girl.
Her pregnancy was normal, but as soon as she held her newborn, Sharon sensed something was wrong. The baby was sort of floppy; she would gag and choke. And she couldn’t eat. She literally could not swallow, and was suffocating when she tried to eat because she was gagging and couldn’t breathe.
In seven months of testing, and many trips to and from the hospital, no explanation had been found for their baby’s condition. Sharon and Boris had named her Liv, to affirm their baby’s struggle and their will to help her. They made a decision to insert a long-term feeding tube directly into Liv’s stomach– so she could be nourished and relieved of the gagging and vomiting. During the surgery a muscle biopsy was performed which revealed that Liv had a very rare neuro-muscular disorder: Nemaline Myopathy (NM). The condition is congenital, and works at the cellular level to cause overall weakness in the muscles of the body.
This diagnosis gave Sharon and Boris a new direction for helping their baby. Where some medical professionals told them to wait and see, Boris and Sharon went into action. They started reading research studies, located therapeutic services and most of all, connected with other families who had a child with NM. Among these connections was buildingstrength.org, a parent-founded organization dedicated to finding and funding treatments for NM. In the four months since Liv’s surgery Sharon has organized a fund-raiser loveliv.org, to be held May 2013, to support two specific research studies funded by Building Strength.
As for Liv, she is a beautiful baby with a pleasant and amiable disposition who is delighted by her big brothers and is very interested in her surroundings. She just had her first birthday, and Sharon and Boris are very clear-eyed about what’s ahead. They are quite unsure if there is a so-called happy ending to their story. But they have learned, as have most parents of children with special needs, it must be their personal mission to see that their baby has every chance to have a fulfilling and productive life.