Our Story

Who is Pietro?

Most children with DMD are confined to a wheelchair by the time they are 12 years of age, and succumb to the disease in their late teens due to respiratory complications. To date, there is no acceptable treatment or cure for DMD, a realization that temporarily paralyzed the Scarso’s and their family; but not for long. Pietro’sfight.org is a nonprofit organization dedicated to raising awareness and funds to find a cure for Duchenne Muscular Dystrophy. It was founded by Manni and Dayna Scarso in 2012 after the couple learned the devastating news that their then-3-year-old son Pietro was diagnosed with Duchenne Muscular Dystrophy (DMD) – the most common and lethal childhood genetic disorder in the world affecting one in every 3,500 male births.

Feeling revitalized by the love and support of family and friends, Dayna and Manni Scarso were determined to save Pietro and the thousands of boys like him by establishing a foundation focused on searching for and funding DMD research that will ultimately cure this deadly disease. The funds they raise support the most promising research programs aimed at treating and curing DMD. For the first time ever, there is hope to find a cure for this destructive disease in time to save Pietro and many other boys and their families.
Pietro is our beautiful, happy son who is perfect in every way, a true blessing. You’d never know that this precious little boy who was born on May 14, 2009 is today battling a fatal muscle-wasting disease that could cripple, even kill him, way too early in his life. From the moment he entered this world, Pietro was cool, calm and collected. Waiting in the nursery for him, we prepared ourselves for a crying, fussy baby, as the loud cries of other babies filled the room. But when the nurse carted Pietro in, he was quiet. Looking into his bassinet, we saw only an intent gaze and all smiles, no tears.

Three years later, Pietro is still that same cheerful boy. Most everyone who meets him calls him “an angel,” and says, “He’s perfect!” They are no doubt referring to his kind, patient old soul. Before Pietro started walking, he’d sit for hours, playing and entertaining himself, happily allowing us to take millions of pictures of him propped up and dressed up, with biggest smile ever.

Fourteen months later, Pietro’s brother Nico was born and was not quiet about anything. He came out kicking and screaming like a normal newborn, but is a completely different child. Pietro understands the meaning of “just one.” Nico takes a hand full. Nico pushes the limits and doesn’t look back, while Pietro is always looking over his shoulder. They are the ideal sibling match.

A Cry for Help

Pietro IS the perfect angel. He was given the #1 sharer award in his nursery school program because if someone falls, he is right there to wipe their tears and pick them up. However Pietro’s huge smile hides what’s really going on inside his body, for his muscles are deteriorating at an alarming pace. Today we are here to pick him up, and save his life. Unless a cure or treatment for Duchenne Muscular Dystrophy is found, Pietro will lose his ability to walk by adolescence, and will subsequently lose all muscle function. Like all boys with Duchenne, he will die from respiratory or heart failure in his late teens or early 20s. Well we are certainly not going to accept this without a fight! With the help and support of our dear friends and family, we have hope. Visualize positive things and positive things will come your way! Please find it in your heart to look deep into this incredible smile, and reach into your pocket to help us find a cure.

Our Story:

Like every parent, we prayed for a healthy baby, and worried about the usual diseases and disabilities. Duchenne Muscular Dystrophy wasn’t on our list. Little did we know that DMD would become our life. DMD affects one out of 3,500 boys each year worldwide, but we had never heard of it.

On July 12, 2012, we scheduled an appointment with a pediatric neurologist because Pietro was having difficulty on the stairs in our home. We walked into Dr. Chiriboga’s office at Columbia Children’s Hospital thinking our son was somehow delayed physically. We spent 30 minutes with Dr. Chiriboga expressing our concerns. After briefly examining Pietro, she said to us, “Well, you know he has Muscular Dystrophy right?”

What? What did she say? Muscular what? Muscular Dystrophy? NOOOOO, it can’t be! Not our beautiful boy! We both looked at her with open mouths and tear-filled eyes.

We scream with frustration wondering why we’d not heard about Duchenne before. Prior to our Columbia visit, we had taken Pietro to many doctors including occupational therapists, physical therapists, a pediatric orthopedic and a pediatric neurologist at a different local hospital. They all said the same thing – he is low tone, the bottom percent of 100 kids, but an average 2-3-year old boy, so “just let him be.”

who-is-pietro-2-682x1024Dr. Chiriboga was shocked that this was the first time we were hearing of Duchenne. She sent Pietro for a CPK test the same day. We would have preliminary results in 24 hours.

On Friday, July 13, 2012, Pietro’s results came back. His CPK numbers were off the chart. She was 99 percent certain it was MD. Our next step was to do genetic/DNA testing. We waited what for what felt like an eternity…still hoping, praying for some error. Eight weeks later it was definite. Pietro has Duchenne Muscular Dystrophy.

One blood test and our world has changed forever. Our son will have to fight for his life, for the rest of his life!

Immediately we knew we would fight with him, for him, for all those with DMD. We will not let this break us or stop us. We began to research, looking for treatments and answers. We reached out to other families like Cureduchenne.org, Charleysfund.org, Ryansquest.org andMichaelscause.org. We asked so many wonderful families about treatments, supplements, what were good physical activities, and their secrets to a healthier, longer life. Now we need your help too to save his life!

Why Pietro’s FIGHT?
We have to spread awareness of this devastating and debilitating disease. We need to raise money for crucial medical research. And ultimately, we MUST find a cure in time to save Pietro and all children with DMD. To do that, we need your assistance.

Please explore our website to learn more about this disease and support our fundraising efforts. You can donate right here, right now, online. We implore you to help today!

Thank you for your interest in Pietrosfight.org.

With sincere gratitude,
Dayna and Manni Scarso
Pietro and Nico’s Mom and Dad