Will met Katie through an online dating site. When they met, however, they discovered that they had several acquaintances in common. There were a lot of things for them to talk about in the process of getting to know each other. One thing they did not have to discuss, however, was Will’s health condition: he told Katie within 30 minutes of their first online chat that he suffers from spina bifida.
Katie recounts their story on the Spina Bifida Assocation’s “Real Stories”page. She says the way Will presented the information to her was reassuring. She researched the disease online right away, and learned quickly that the disease did not define Will because it did not have to.
Now married, Will and Katie are a prime example of what Spina Bifida Awareness Month is meant to accomplish. The Spina Bifida Association dedicates the month of October to educating the public about this birth defect, which affects more than 166,000 Americans.
Throughout the month of October, the Spina Bifida Association works with its chapters to raise awareness and visibility of spina bifida. Thousands of people across the country take part in events like marathons, walks and pledge drives to raise support for spina bifida research and treatment. In addition, people join forces on social media for a campaign called Celebrate SB, promoting positive images about what living with spina bifida really means.
What is Spina Bifida?
Spina bifida develops while a baby is still in the womb. It results from a disruption in the development of the vertebral arches. The protective bony encasement that normally surrounds the spinal cord does not grow normally, leaving the developing spinal cord vulnerable to damage during the baby’s development. Damage to the spinal cord causes neurological abnormalities that affect the growth and function of the lower extremities. These abnormalities are all over the map: they can include lower extremity paralysis, spasticity or some degree of both.
Spina Bifida is one of the most common birth defects today. In New York, 2.06 babies out of 10,000 babies are affected with this medical condition; an estimated 4,015 people currently residing in New York have spina bifida. In New Jersey, spina bifida affects about 1.97 babies out of 10,000 babies are born, and about 1,710 people within the state are living with the condition.
A Part of Life
Will recounts that he used to try to hide his condition, afraid that it would prevent him from connecting with people. But, as he grew older, he realized that his medical problems were simply a part of his life. His birth defect didn’t have to define him.
Different spina bifida patients experience symptoms of varying severity, but the condition’s effects are typically progressive, meaning that they worsen with age.
For some parents, this information comes off almost equivalent to a death sentence. There is no underestimating the emotional toll of finding out that the baby you expected to be born healthy will experience physical challenges for the rest of his or her life.
But there is a great deal of hope for children born with this condition. While in the past, the mortality rate for spina bifida patients was very bleak, most patients today live for many years. What’s more: with early, appropriate management, children born with spina bifida can enjoy a very high quality of life. Success stories are abound of spina bifida patients who have integrated competitive sports, dancing and yes, even romance into their lives. They are undaunted by their condition.
As Katie recounts, the key to the success of her relationship with Will was awareness — not only between the two of them, but in the process of making each other a part of the other’s wider circle.
“My parents and friends had some concerns when they saw our relationship was getting serious: How long will he live? Can he have children? But Will was very open, honest, and patient in explaining things. He provided them literature and made them see that his spina bifida didn’t define him,” she recounted on the Spina Bifida Association site.
There are eight spina bifida clinics in New York and four in New Jersey. You can find out more about them, and more about the condition, by visiting the Spina Bifida Resource Center website.
Who We Are
At Oshman & Mirisola, we are attorneys who have helped parents of children diagnosed with spina bifida and other kinds of birth defects obtain the resources they need when the defect is due to exposure to a prescription drug or other preventable cause. Call us at 800.400.8182 to learn more about how we can help you, or fill out the form on the right side of this page.
image credit: Spina Bifida Association