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Running for Olivia & Jack

Organized by: Lauren Barrett

Lauren's Photo
Lauren's Photo
Lauren's Photo
Lauren's Photo
Lauren's Photo
Lauren's Photo
Lauren's Photo

Event Name: 2015 DICK'S Sporting Goods Pittsburgh Marathon

EVENT DATE May 03, 2015

THE STORY:

What is Pyruvate Dehydrogenase Complex Deficiency (PDCD)? Pyruvate dehydrogenase complex deficiency (PDCD) is an inherited inborn error of metabolism. This means that children born with this disorder can’t convert some of the food they eat into energy.

In a normal metabolic cycle, carbohydrates are broken down into energy by certain enzymes called the pyruvate dehydrogenase complex. Children with PDCD have fewer enzymes than those without the disorder, so they are less able to break down carbohydrates and sugars into energy.

This energy is used not only for children to run, play, and learn, but also for cell formation, growth, and throughout the lifetime of a cell. Without energy for the cells to maintain healthy functioning, they can not function correctly, become damaged, and possibly die. Without healthy functioning cells in all parts of the body, children with PDCD can experience poor muscle tone, neurological damage (brain cell injury, cognitive delays, and seizures), and other problems like poor feeding and lethargy.

The inability of the body to break down carbohydrates into energy produces a potentially dangerous chemical called lactic acid. High lactic acid can make symptoms worse, as well as cause low blood pressure, vomiting, high heart rate, and rapid breathing. Each child is affected a little differently, and severity levels vary from mild to fatal.

Five years ago, my baby cousin Olivia Paige was born. After months of back and forth trips to Children’s Hospital, she was diagnosed with PDCD. Since then, she has overcome so many obstacles and amazed all of her doctors!

What is Prader-Willi Syndrome (PWS)? PWS is a rare genetic disorder that happens randomly. PWS affects the productivity of the hypothalamus and causes Hyperphagia. Hyperphagia is an insatiable appetite, regardless of how much is eaten. Coupled with a slow metabolism, people with PWS do not sense that they are full while eating and cannot regulate how much they eat. Through no fault of their own, they tend to become obese and need close regulation of their physical activity and diet. Currently, there is no known medication that is proven to reduce the hunger that these children feel every day.

Last year, my best friend, Nikol, gave birth to her first son, Jack Maher. Within weeks of his birth, Jack was diagnosed with PWS. Jack has come so far in just one year and continues to amaze everyone by working harder and growing stronger every day!

On May 3rd, I am running my very first half-marathon, in honor of these brave and inspiring children. We need to raise awareness for these extremely rare and underfunded diseases. Proper funding will fuel vital research and clinical trials for PDCD and PWS, leading to better therapies, treatments and hopefully, someday, cures. Donations will go to the United Mitochondrial Disease Foundation in Pittsburgh, Pennsylvania and the Prader-Willi Foundation of New England.

Support Olivia and Jack and donate today!

$1,185

 

119% Raised of $1,000 Goal

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  • Lauren Barrett

    $100

  • Mark & Donna Werner

    $100

  • Lauren Barrett

    $100

  • Anonymous

     

  • Ruth Cullen

    $100

  • Steve and Jeannine Girard

    $250

  • Denise and Jay Staley

    $25

  • Floyd and Carol McKain

    $120

  • John and Nikol Maher

    $100

  • The Tookey Family

    $50

  • Mark, Sarah, Ella and Grady

    $50

  • The Hutchison's

    $15

  • The Arndts

    $25

  • Repcik Family

    $50

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Organized by

Lauren Barrett

This is a direct to organizer fundraiser.

Donor Comments

Repcik Family

Repcik Family

DONATION: $50

2 years ago

The Arndts

The Arndts

DONATION: $25

2 years ago

The Hutchison's

The Hutchison's

DONATION: $15

2 years ago

Mark, Sarah, Ella and Grady

Mark, Sarah, Ella and Grady

DONATION: $50

2 years ago

The Tookey Family

The Tookey Family

DONATION: $50

2 years ago

John and Nikol Maher

John and Nikol Maher

DONATION: $100

You are amazing! We love you! 2 years ago

Floyd and Carol McKain

Floyd and Carol McKain

DONATION: $120

2 years ago

Denise and Jay Staley

Denise and Jay Staley

DONATION: $25

Prayers to Olivia and Jack and their families. Good luck Lauren! 2 years ago

Steve and Jeannine Girard

Steve and Jeannine Girard

DONATION: $250

2 years ago

Ruth Cullen

Ruth Cullen

DONATION: $100

2 years ago

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