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Bill Strong
By Renee Roberson
Each month, iParenting.com spotlights a father who inspires and moves us, who embodies the qualities that we all admire in a person, a man and a father. Above all, the Dad of the Month is dedicated to his children. Rich or poor, famous or not, he shines as an example of what fathering is all about.
Central California resident Victoria Strong always knew her husband, Bill, would make a wonderful father, but she had no idea how powerful a father and advocate he would eventually become in the face of their child's life-threatening illness.
The Strongs' 18-month-old daughter, Gwendolyn, has spinal muscular atrophy (SMA), the leading genetic killer of children under the age of 2. She is completely paralyzed and needs the help of machines to breathe, eat and even swallow. Bill Strong, a hands-on father from the very beginning, has rallied to provide the best care for his daughter, all while working to raise awareness for SMA and help other parents who receive the same diagnosis for their children.
"We are 50/50 caregivers completely and I never had to ask for that," says Victoria Strong. "He puts 100 percent of himself into making our daughter happy and he has from the moment she was born. He manages to be honest with his grief, yet is able to focus on the most positive aspect of our lives – our sweet, smiling daughter."
"We felt lucky to have that diagnosis because we thought she would make a complete recovery," says Bill Strong. "But about three months later, she still wasn't developing normally."
The Strongs visited a neurologist who performed a blood test that definitively confirmed that Gwendolyn did indeed have SMA, which is caused by a missing gene combination responsible for the production of a protein that is critical to the survival and health of nerve cells in the spinal cord that the brain uses to develop and control the muscles. The Strongs were carriers of one copy of this recessive, defective gene and unknowingly passed their copies on to Gwendolyn.
"The devastation was ... beyond words," says Strong of the diagnosis. The Strongs were simply told to take their baby home and love her, because there was nothing else that could be done and most babies with SMA don't make it past 2 years of age.
However, Strong and his wife decided right then and there to explore other options. "We always knew we would know when we needed to seek help elsewhere," he says.
With the help of Victoria Strong's sister, the Strongs put together a list of SMA specialists all over the United States. The Strongs now work with a team of neurologists and pulmonologists at Stanford University, which is just a short drive away from their home.
When Gwendolyn was 6 months old, she received surgery to have a feeding tube implanted, and shortly afterward, received a bi-level positive air pressure machine, or "bi-pap," which is a non-invasive feeding apparatus. All in all, Gwendolyn's daily care requires the help of seven life critical machines.
Strong says he is grateful they were able to spend the month after Gwendolyn's initial surgery with a team of specialists who knew exactly how to treat a baby with SMA, and showed the Strongs how to work the machines they would have to use at home. "They knew how to coach a parent with SMA," he says. "You needed to know how to use the machines. You're going to have to save your child's life on an almost-daily basis. I personally looked at the machines as our hope. They provide our daughter with the quality of life she has today."
In addition to updating their blog daily, the Strongs have established the Gwendolyn Strong Foundation (http://GwendolynStrongFoundation.org), which seeks to raise awareness about and fund research for SMA. In addition, the foundation has also launched an online site (HelpisHere.org), which provides user-generated information to those impacted by life-altering diseases. "We hope to communicate with an online community that will help millions of other people in life-altering situations as well," says Strong.
Strong has also been instrumental in creating awareness for the need of the SMA Treatment Acceleration Act, which is bipartisan legislation proposed in the United States Congress in summer 2007 to allocate federal resources to nonprofit and research organizations focused solely on finding a treatment and/or cure for SMA. Researchers have estimated they are four to five years away from that goal.
"There's virtually nothing we can do to save Gwendolyn's life," says Strong. "We don't hold false hope that we can save Gwendolyn. But there's no way we can sit back and just leave things as status quo."
The Strongs launched PetitionToCureSMA.com in July 2008 as a grassroots effort to gain support for the SMA Treatment Act, and collaborate on a daily basis with organizations responsible for the SMA bill, such as the Families of SMA, Fight SMA, the SMA Foundation and the Muscular Dystrophy Association. To date, the petition has received more than 56,000 signatures from all 50 states and more than 120 countries from around the world.
Life Lessons from a ChildGwendolyn's mind is no different from that of any other child her age, and she has slight movement in her hands and feet, with a little control in her neck. Strong enjoys taking regular walks with Gwendolyn, where they can enjoy California's moderate climate. He says she also enjoys animals, balloons, watching videos and Elmo. When talking about his relationship with Gwendolyn, he emphasizes the strength and perspective he's learned from his own daughter.
"Obviously, material things are so far down the list of things that are important," says Strong. "I've always had the 'life is short' attitude, but never knew I'd truly learn what that means from my 18-month-old daughter. We do have difficult days ahead, and I am a completely different person because Gwendolyn has been in my life. I'll never regret having gone through these difficult times because of it."
"I wish our daughter did not have SMA and that she would grow to live a full life," says Victoria Strong. "I wish this for many reasons, but watching Bill with her makes me long to see them together always."
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