Pietro’s Fight | Duchenne Muscular Dystrophy

December 18, 2014 /

Pietro’s Fight | Duchenne Muscular Dystrophy

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Look at this handsome boy. This is Pietro Scarso, just 2.5 years old.

What a bright light. I mean just look at this FACE. You are probably smiling back at this child, right? His adorable brother Nico is beside him. They’re 15 months apart.

These boys are inseparable.

Pietro is a loving, sweet boy. He absolutely loves legos. I mean he

LOVES – ALL – things – lego and… he loves life!

He loves Lego World
His favorite movie is Lego Movie.
He considers himself a master builder.
He’s calm and he’s patient
He loves to EAT
and dance! They have a nightly dance off after dinner! AKA his dance room

I loved photographing them for their Christmas photos over the years. Its always so much fun to watch children play together. Boys seem to explore the world inch by inch.

He was born on May 14th, the same day as my son Luc. I joke my son is the best of our 3 kids. haha

Pietro is now 5 1/2 years old. He’s a kind and gentle soul. Dayna’s favorite memory of her son as a child is watching him in his highchair. He would just watch tv and grab whatever food was on his plate.

And eat… and EAT and eat!

He wouldn’t even look at the food, just eat whatever was in his hand.

But today, Pietro faces a lot of challenges. He has trouble going up and down stairs. He can’t play with children or ruff house. He can’t exert himself like most boys could. In the Summer of 2012 they found out Pietro had a rare disease.

—- JULY 2012 —-

My friend & client Dayna found out Pietro had a rare lethal disease just 8 months after I met them. She started a foundation called Pietro’s Fight Pietrosfight.org when her son was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD children 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.

Like every parent, Dayna and her husband prayed for a healthy baby, and worried about the usual diseases and disabilities. Duchenne Muscular Dystrophy affects one out of 3,500 boys each year worldwide, but they had never heard of it.

They noticed Pietro was having difficulty on the stairs and made an appointment with a pediatric neurologist just 2 years ago. Hearing the doctor say that Pietro had DMD they looked at her as their eyes filled with tears.

Pietro will face many challenges in the next 5+ years. The progression of the disease is that children with DMD cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, every skeletal muscle in the body deteriorates. Although Duchenne is the most common fatal genetic disorder to affect children, there is NO cure. The simplest of tasks become difficult, and in the later stages, heart and breathing muscles begin to fail.

Nearly 20,000 boys are living with the disease in the United States alone, and over 300,000 worldwide.

One of Dayna’s goals at Pietrosfight.org is to urge the FDA to approve a drug that has been in clinical trial in boys for the last 3 years called Eteplirsen. This drug is shown to slow down the progression of the disease and has defied the natural history of DMD. Twelve boys currently in the trial are now in their teens and in most cases should have been in wheelchairs, but are NOT. Instead, they’re walking, playing sports, and doing things that shouldn’t be possible for a DMD boy. Sarepta’s timeline has been delayed for a Duchenne Muscular Dystrophy drug as the FDA is now requiring additional data as part of the submission. We are asking the FDA to enact Fdasia which was put in place by the FDA and Congress for fatal diseases with no cure. The drug has been tested for 3 years and is only showing positive results. Instead of the application being submitted by the end of 2014 this means it is now being pushed back to mid 2015.

“When did we lose our right as parents to know what’s good and bad for our children. Why can’t we decide our child’s well-being. This trial is the hope we see for Pietro’s future, if data is showing it safe and effective, what’s the problem FDA?” Dayna Scarso, Pietro’s mom.

Here are few of my favorite photos of these handsome brothers. PLEASE consider donating today HERE: http://www.pietrosfight.org/donate/