Shira Fisher is defying the odds.
Born with Spinal Muscular Atrophy (SMA), a condition that makes it impossible for her to swallow, sit up, roll or even lift her arms, she has been on life support for all of her life. But that life is a miracle in itself.
At six years old she is bright and sweet and has already lived five times longer than anyone expected. Her prognosis was so poor in her infancy that her family celebrated each month that she survived. Just 30 per cent of SMA children live past the age of one and 15 per cent past the age of two.
As her sixth birthday approached last June the hope was that she could celebrate with a trip to Disneyland. When that proved to be impossible Help Fill A Dream and Victoria Costume brought the Disney characters to her backyard for a happy celebration with family and friends. Help Fill a Dream has had a strong connection for this determined little girl and her devoted family. In the past the foundation has helped the family with the purchase of a special chair for Shira, a ramp for their van and modifications to their home.
To care for Shira at home, her father Brad gave up his real estate job to be her full time care giver while her mom Maxine works and big brother Max attends school.
Brad’s daily routine with Shira starts with more than two hours of preparation each morning to take care of her physical needs. Shira can never be left alone. Despite vigilant attention, she has flat lined five times during her short life.
“There is no cure for Shira’s condition and no drugs or surgery that can improve her situation,” says Brad.
Caring for Shira has meant a financial toll. Government funding is in short supply and the family has gratefully accepted the assistance of Help Fill a Dream and other charities.
“You hear how people in the US go bankrupt because of medical expenses but, in fact, the situation is the same here for the families of children like Shira,” says Brad. “Very few resources are available because SMA is relatively rare (one in 500 babies is born with it) and the typical survival period so short.”
Despite the difficulties and burdens that come with a condition like Shira’s her family views their journey with her as a lesson in purpose and believing in hope. Brad is quick to point out that Help Fill A Dream and other charities have been an invaluable help in that journey.