“You were born with the ability to change someone’s life, don’t ever waste it.”
I’ve been pouring a lot of my heart into this year’s spina bifida awareness campaign for the Spina bifida association of Central Florida and am excited to finally be at a point to share the final campaign for 2013. I have to admit this time of year is quite emotional and reflective for me and undoubtedly has had an impact on the awareness campaign that has been created over the past three years. Just over three years ago we learned our son Chance would be born with spina bifida and as we began to learn so much about spina bifida and were surrounded by the fear and uncertainty that comes with the diagnosis we were embraced by a community of families online – many who were so hurt to hear that the diagnosis scared us so much that we nearly gave up on our baby boy’s life. I am not ashamed to say that the information online and provided by medical professionals is scary…I don’t now how any normal human being wouldn’t feel like giving up when they learn of all the complications that can happen living with spina bifida. It’s a conservative estimate that 50% of pregnancies are aborted due to spina bifida, a Wayne State University study in 2011 indicates it may even be as high as 64%. It’s so sad, but not surprising because of how frightening some of the material about spina bifida is. I recall so clearly being told not to google “spina bifida” by my doctor and by the families who had children with spina bifida because of the scary things I might find online. I recall receiving printed material the day we were diagnosed with information about spina bifida – information dated from between 1977 and the early 1990′s, clearly outdated material that doesn’t reflect how much has changed and improved with the care of individuals with spina bifida. What was lacking most three years ago was what every parent expecting a child with spina bifida needs…something that gives them hope. They need to be told the truth and understand the facts but they need to hear that their child will be okay and will live an amazing life no matter how many challenges may arise. Chance has definitely been a blessing to our family and we couldn’t imagine what life would have been like if we had have given up. He now inspires me to help change the negative stigma associated with spina bifida and help create a more positive perception of the birth defect.
I want to thank you all in advance, I have felt the love as I’ve shared some of the glimpse’s of this year’s work and I’m excited to hear what you all think of this year’s campaign. I’ve come to realize that by giving our son a “chance” it’s given me the strength to pour so much of my heart into helping our spina bifida community. After pouring more energy into this year’s campaign than in the two year’s campaign’s combined I feel incredibly blessed and appreciate the time all 30 families have taken to be a part of this special work. Every single person holds a special place in this year’s campaign and has inspired much of the messaging associated with the images. I’ve had one family travel from Mexico, another travel from hours away in south Florida and many others travel an hour or two to meet to be a part of this work. Now I am honored to know that through all this work we’ve managed to inspire many and the spina bifida awareness work from the past three years are among the things families will now find if they search for “spina bifida” online on google or other social media sites. Though we won’t ever be able to prevent families from finding the stories and photos that may make a family fearful of having a child with spina bifida we can hope that somehow they’ll come across some of this hopeful work I’ve spent so much energy working on and that they will get to feel uplifted by these individuals living with spina bifida that I’ve been blessed to have an opportunity to photograph.
If you’d like to support our local spina bifida community please consider a donation to Chance’s team in this year’s walk-n-roll event. All donations go towards supporting our families here in central Florida affected by spina bifida. I hope you all enjoy this year’s campaign!
by Amanda Kern
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