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Charlotte family celebrates son’s survival, daughter’s death

By Shirley Rhodes

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    Bee Mighty Foundation, a nonprofit launched in November and managed by the Presbyterian Healthcare Foundation, started accepting grant applications in January. Details: .



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Mother’s Day is a special time of celebration and reflection for Jenny and Gary Fike. This year they will celebrate their five-year wedding anniversary and son Noah’s second birthday.

But for Jenny, Mother’s Day is “bittersweet” because it is also the day she lost her daughter, Elizabeth Grace, Noah’s twin sister.

Jenny, 34, went into preterm labor at 21 weeks while pregnant with twins. Elizabeth Grace was delivered at 24 weeks and weighed less than 1 pound; she did not survive. During Elizabeth’s birth Jenny developed an infection requiring her to deliver Noah six days later to save his life.

Born 15 weeks early, on May 15, surviving twin Noah weighed 1 pound 15 ounces. They didn’t know if he would survive the night. During the next five months he remained in Presbyterian’s Neonatal Intensive Care Unit fighting through numerous infections and abdominal surgeries. He struggled through Bilateral Grade III Brain Bleeds, Severe Reflux and GERD, Failure to Thrive, Retinopathy of Prematurity, and a feeding tube placement in his stomach.

“Many of his days were critical with no guarantee of a tomorrow,” said Jenny, “and it was difficult grieving the loss our daughter while watching our son fight for his life.”

But with the support and prayers of family, friends and church members they made it through each day.

After five months in NICU, Noah was discharged.

“It was the happiest day of our life,” said Jenny, who resides in Fort Mill. “Everyone we grew to love at the NICU came over to say goodbye. He took one last farewell tour of NICU, received his graduation cap and made his first exit into the real world.”

The first night at home was terrifying without medical equipment and staff to relay on but each day got easier as they fell into a routine that included six sessions of therapy per week (speech, physical, occupational and early intervention play); and usually a doctor appointment to the pediatrician, neurologist, gastroenterologist or ophthalmologist in the mix.

Noah’s therapy has helped but it is expensive. They have insurance but it only pays for half of what he needs.

“He just started crawling, but still requires a feeding tube to eat,” said Jenny.

When they learned that ABM therapy was available in Charlotte, they were excited about the possibilities for Noah, but disappointed to learn that it was not covered by insurance. Anat Baniel Method (ABM) therapy uses gentle touch and movement as a means to communicate with the brain and encourage new pathways. It is believed to be useful in helping children overcome challenges such as learning difficulties or developmental delays due to damage to the brain or nervous system.

Determined to give Noah every opportunity, they turned to the Bee Mighty Foundation for assistance.

Bee Mighty, a nonprofit launched by Candace Richter in November and managed by the Presbyterian Healthcare Foundation started accepting grant applications in January.

Thanks to donations and support of the Bee Mighty, Noah received funding for a four-day intensive ABM therapy session to get him started.

As Jenny and Gary celebrate Mother’s Day this year, they are hopeful.

“Have you ever watched a butterfly working its way out of a chrysalis?” said Jenny. “The process requires an amazing struggle. Anyone who does not understand the purpose of the struggle might in sympathy snip the chrysalis. This would make it easier for the butterfly to get out, but the butterfly would likely be underdeveloped and never fly. The struggle is part of the process of developing strong wings.”

Elizabeth Grace “held on as long as she could so Noah could become a butterfly. We wished we could have taken away all of his pain and suffering but that was not part of God’s plan. Noah needed the struggle in order to develop his strong wings.”

Shirley Rhodes is a freelance writer. Have a story idea for Shirley? Email her at shirleyrhodes1@gmail.com.
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