Hello everyone! How excited we are to represent our beautiful Mountain Mama, our lovely Cadence a testament to the wonderful healthcare our children receive in West Virginia, that despite being a humble state, we do not have to settle for meager healthcare for our kids.

     By way of introductions, my name is Leslie Pierce, and on June 15, 1996 I was made a mother by the most exquisite black haired child I've ever seen. Cadence Journey Pierce was perfect.. 10 toes, 10 fingers, sapphire blue eyes. She was the first grandchild born to either side of the family, eagerly anticipated for years.  Too bad back in those days, we couldn't see her faulty genes. Little did we know that harbored inside her was a disease so deadly that it claims 75% of the children that are born with it, most in the first weeks of life.  And two weeks later, this monster tried to take our child as well. I won't go into the heart-wrenching details here in print, I think this video sums it up pretty well.

The learning curve for a first time mom is fairly steep, but babies are forgiving little creatures, and it usually works itself out pretty quickly for us moms.. But it was no ordinary child that made me a mother, this was a child with a complex biochemical metabolic disease with no efficacious treatment and definitely no cure. My learning curve wasn't just steep, it was straight up. The first year with Cady was like learning to walk a tightrope.. 1,000 feet up.. over shark infested waters.  YIKES! It was all or nothing, her life was on the line. Her condition is managed tightly through her diet. We have educated ourselves on the minutia of her condition, and are able to spot the minute she begins her way to a metabolic decompensation.  That much is vital. If the decompensation isn't immediately corrected, full blown cascade begins, and then we're in for the fight of her life. We've been on that slippery slope a handful of times in Cady's life, and it's never pretty. By all medical reckoning, Cady should have lost her battle at least twice. However, Cady has a Champion of her own, and God was not done with her at either of these junctures. Cady is a true Miracle, and I hope as you walk with us on this journey, you'll come to agree.

Above: Cadence accepts a pen from then Governor (now Senator) Joe Manchin as he signs the Newborn Screening Expansion into law.


Cadence is the first child born in the state of West Virginia with Propionic Acidemia and lived to tell about it.  I am a fierce advocate, and it is my mission to make sure no other parents walk this path alone, that the fire that I walked blazing this path with Cadence will not be repeated by others.  Statistically, according to birth rate in our state, a child like Cady should be born about every five years.  When Cady was 11, we got the New Newborn Screening Expansion passed, and went from testing for six deadly diseases at birth to 29.  Propionic Acidemia is on that new expanded list.  In the time that it took to get this passed, it's likely that we (as a state) lost two children to PA. But, because now we will be able to recognize the PA children coming and are able to treat them, lives that would have ended in mystery and heartbreak early in their days can have their stories rewritten. I think that is simply awesome, and I am humbled to be part of that.