Real Stories

Believe in Miracles

December 2009 - It was love at first sight when Jeanna Huette laid eyes on her granddaughter Elizabeth, born on Sept. 29, 2003. The baby, who would be known as "Lizzy," was the first child born to her daughter Christen. Lizzy "I remember when (Lizzy) was being tended to shortly after birth, she heard my voice and lifted her head to look over at me and our eyes met for the very first time. It was love at first sight; it was also the only time I was able to witness Lizzy holding her head up unassisted," she said.

Soon after Lizzy was born, Mrs. Huette had a suspicion that something just wasn't right with the newborn. "She was very 'floppy' and could not handle her own secretions. I used a bulb syringe to clear her airway constantly," she said.

Mrs. Huette said that most folks felt like she was overreacting, but she worried as Lizzy became weaker and weaker, and their pediatrician shrugged off their concerns saying "all kids are different." When Lizzy reached five months old she was undergoing physiotherapy. This doctor knew something was terribly wrong and they made contact with a pediatric neurologist who assigned tests to help determine what was happening to the child.

The results showed that Lizzy had SMA Type 1, or Werdnig-Hoffman Disease. The news was devastating to the family. Children with Type 1 are not expected to survive past their second birthday without extensive respiratory support and the most aggressive of care. The news spelled out a future with complications and a great deal of heartache. The family was told to take the baby home and love her – Lizzy would more than likely die before the age of one – two years old if they were very lucky. "I dropped to my knees as if someone pierced my heart with a hot knife," she said. "How could this be? How could a child so beautiful and full of promise be handed down a death sentence? How could we even consider just letting Elizabeth die? How could we not try to prevent the inevitable?"

Mrs. Huette knew the family was going to have to get aggressive to save Lizzy's life. She started searching online and found that a clinical drug study at Stanford University in California, funded in part by the Hope & Light Foundation, was trying to save children with SMA Type 1. She contacted Dr. Wang, the leading researcher for hydroxyurea, desperate for her grandchild to become a part of his study. Lizzy was accepted into the study and for the first time Mrs. Huette said she felt hope for the future.

On June 10, 2004, they headed to California and began the drug trial which addressed the production of the SMN1 protein in the white blood cells. Their visit was not without complications and they continued to explore the right diet and respiratory protocol to keep their beloved Lizzy alive. Consulting with fellow SMA families and Dr. Mary Schroth, a Wisconsin pulmonologist proved instrumental in learning more about how to keep Lizzy healthy. "I learned all I could about the diet and respiratory equipment she needed. Most importantly I learned to observe her for signs and symptoms that require immediate attention such as suction."

Lizzy would receive a Gastrostomy Tube with fundoplication (a surgical procedure of tucking or folding the top part of the stomach around the esophagus to prevent reflux); the procedure to prevent aspiration pneumonia while maintaining proper nutritional intake. This was complete while Elizabeth was still strong enough to undergo an anesthetic. Lizzy turned 6 years old in September 2009. The respiratory protocol continues. She has physiotherapy and is stretched daily. She also participates in speech and physical therapies. She is extremely happy and bright according to her grandmother. "She is much loved and is able to color and paint," she said. "Like other six-year-old little girls she loves her makeup, jewelry and dresses. Her favorite book is 'Fancy Nancy' by Jane O'Connor." Lizzy has a powered wheelchair which is purple and decorated with Disney Princess stickers and even features beaded trim and tutu skirt. "My daughters and their families are very supportive of Lizzy and treat her as a normal child with special needs," she said. Mrs. Huette said that every year on Lizzy's birthday she sends the neurologist a card with her progress. "I want him to know how well she is doing and that she has beaten 'the odds.' I'll never give up and will continue to do all I can to ensure Lizzy remains happy and healthy with many more birthdays and milestones to look forward to," she said.

Mrs. Huette prays for a cure and spends time helping other families along the way like those who helped her family. You will often hear her say, "We believe in miracles because we live with one."