Fireflies of Hope

Prune Belly Syndrome: My friend's journey with his "wild and precious life" (and his counsel)

The following is the personal account of my friend* Kurt Walker's lifelong journey with Eagle-Barrett Syndrome (more commonly known as Prune Belly Syndrome, or PBS). Kurt is a Pastor, teacher and preacher at Faith United Church of Christ in Indianapolis and, wow, does he make a difference to a lot of people:

"Tell me, what is it you plan to do
with your one wild and precious life?" 
~excerpt from Mary Oliver's poem, "The Summer Day"

"I was born with a rare birth defect known as Prune Belly Syndrome (prunebelly.org). It occurs once in every 40,000 live births, with a 50% survival rate in utero and another 50% survival rate after 24 months of age. According to the latest genetics statistics, there are currently only 1,495 survivors living in the U.S.

"As my parents struggled to save my life as an infant they were told that, should I survive, I would not be able to walk, I would not be able to stand unless propped up by two walls, I would not be able to ride a bike, that I would never be able to have children, and that I would be one of only a few world-wide to have survived this disease. When you are born under those circumstances, you learn fairly quickly how much everything is a gift from God; a blessing, to be unwrapped daily, as our feet hit the floor to start each new day.

"As I went through the challenges of childhood, I was blessed to have parents who allowed me to

"The world sends us garbage. We send back music"

 

"The world sends us garbage. We send back music.", says Favio Chavez, Recycled Orchestra Director, Paraguay.

When things got tough, I used to say "when life gives you lemons, make lemonade". From now on I will think of the Recycled Orchestra in Cateura, Paraguay and say, "If life sends you garbage, make music".

This story inspired me so much. In fact, I have a new goal to make a little music every day and see how it makes me feel. I used to be very devoted to music but health issues have made it difficult to participate in choirs or sing solos like I used to. It's time for me to get creative and make music on a smaller scale because I know it fills me with joy and hope.

If you would like to donate to the Landfill Harmonic Project click here. They are making a full-length movie coming out January 2014 and need support. They say,

"Welcome to Landfill Harmonic. A film about a garbage picker, a music teacher and a group of children from a Paraguayan slum who play instruments made entirely of garbage. Landfill Harmonic is a beautiful story about the transformative power of music, which also highlights two vital issues of our times: poverty and waste pollution. The story develops in one of the poorest slums in Latin America. Just outside Asuncion, Paraguay; Cateura is the city’s trash dump. It is built on a landfill. Here, people live in a sea of garbage. And they live from garbage. 

"Surrounded by stories of drug-violence, alcoholism and destitution, they make herculean efforts to