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Don Jones' Fundraiser:

Children's Hospital of Pittsburgh of Pittsburgh Foundation

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11 days...
April 25, 2018

We are less than 2 weeks away from The Pittsburgh Marathon. Please make a donation and help me support Children’s Hospital of Pittsburgh as  See more
Don Jones

THE STORY:

My nephew, Landon, was born June 3rd, 2014 at 37 weeks. He was a healthy 7 pounds, 8 ounces, but 24 hours after birth, he was diagnosed with Shone's Complex, an extremely rare combination of 4 congenital heart defects--coarctation (narrowing) of the aorta, parachute mitral valve, sub aortic stenosis (narrowing of the opening of the aortic valve), and supra valvular mitral membrane (abnormal tissue growth surrounding the mitral valve). In addition, Landon also has a hypoplastic (small) left ventricle, the part of the heart that pumps blood to the body. There are less than 1000 cases of Hypoplastic Left Heart Syndrome every year. He was transferred to the cardiac ICU at Children's Hospital of Pittsburgh, where he remained for 23 days, before being transferred to the cardiac unit. Landon had his first open heart surgery when he was just 13 days old, an urgent heart catheterization on August 14th, a second open heart surgery on October 3rd, from which he experienced some complications and required a revision of the surgery on October 6th. He also required 2 additional heart caths, 7 intubations/extubations during the months of October, coded 4 times, including once while he was in his mother's arms, and required CPR once. After 163 days in the hospital, including 56 days in cardiac ICU, Landon got to come home for the first time on November 12, 2014. He had 2 additional heart caths after being discharged, and also required transport from The Medical Center- Beaver to Children's Hospital of Pittsburgh by MedEvac helicopter in December of 2015. In July of 2016, he underwent a fourth open heart surgery. This was to be an "intermediary" to determine if his heart was strong enough to undergo a biventricular conversion, a new surgery being used in studies at Boston Children's Hospital, in which they "rebuild" the heart to have 4 working chambers, more in line with what is normal. Preliminary results looked promising, however a week later, after experiencing a roller coaster of complications, it was discovered that Landon had developed a blood clot in his right atrium, and an emergency surgery was required. After surgery, the surgeon said if he had waited until the following morning as he had planned, the results most likely would have been tragic. A heart cath later that week showed that Landon's heart could not tolerate the increased pressures from the intermediary surgery, and it had to be reversed by making an opening in his atrial septum. During this hospital stay, more complications were discovered. Landon's airway is 60% occluded by scar tissue, he had developed some collaterals vessels, and he also has some arteriovenous malformations, all of which present their own unique set of problems, on top of his heart issues. Landon underwent an additional procedure in December 2016 in which his airway was dilated, and another heart cath showed that he needed to have the third of the three step procedure completed sooner rather than later. He underwent yet another open heart surgery in January of 2017, his fifth open heart surgery in just 2-1/2 years, and his seventh surgery overall. Because of the amazing care they provided Landon, and the comfort and support they offered to my family while going through these emotional times, I have decided to support Children's Hospital of Pittsburgh by giving back. In May of 2018, I will be participating in the Pittsburgh Marathon and Running for a Reason. I am asking for your support, as all donations to my effort will be donated to the Children's Hospital Foundation. The donations will be used for many great programs at Children's, including Pennies from Heaven, the Free Care Fund, Child Life, and many others that help children and their families when they need it the most. Even if it's only $5, every little bit helps, and it all adds up to help provide care for seriously sick children such as Landon, and so many of his heart warrior friends- Ryder, Ian, Brayden, Baylee, Killian, and so many others we have met along the way. A cup of coffee. That's all it costs to make changes in the lives of children and their families that are always greatly appreciated and can never be fully repaid. Children's Hospital of Pittsburgh Foundation wrote - Children's Hospital of Pittsburgh Foundation is proud to be an official charity for the 2018 DICK'S Sporting Goods Pittsburgh Marathon on Sunday, May 6, 2018. Runners participating in the full, half, relay, 5K, kids marathon or pup walk can run for a reason by joining Team Children's and raising funds to help patients and families at Children's Hospital of Pittsburgh of UPMC. To learn more about the Children's Hospital of Pittsburgh Foundation, please visit:givetochildrens.org and learn how YOUR support makes a difference each and every day to our patients and families. For more information or questions regarding Team Children's, please contact Cassandra Mazzotta at 412-692-3909 or cassandra.mazzotta@chp.edu.

$495

MONEY RAISED
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  • Anonymous

    $25

  • Anonymous

    $25

  • Laura Hilliard

    $20

  • Vinny, Autumn, Camden, Landon, and Scarlett

    $50

  • Anonymous

    $30

  • Mary Jones

    $25

  • Jeanie S

    $20

  • Midge

    $50

  • Don Jones

    $250

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124% Raised of $400 Goal

Fundraise for this Campaign

The Team: $93,613 TOTAL RAISED SO FAR

Fundraiser Title

Arlen Janet

Amount Raised

$16,100

 

124% Raised of $13,000 Goal

Fundraiser Title

Sarah Robb

Amount Raised

$5,573

Fundraiser Title

Patrick Nelen

Amount Raised

$2,612

 

653% Raised of $400 Goal

Fundraiser Title

Abby Martin

Amount Raised

$2,170

 

181% Raised of $1,200 Goal

Fundraiser Title

Plamen Lilovski

Amount Raised

$2,164

Fundraiser Title

Shannon Volkar

Amount Raised

$2,140

 

107% Raised of $2,000 Goal

Fundraiser Title

Stef Walker

Amount Raised

$2,110

 

422% Raised of $500 Goal

Fundraiser Title

Christina Lopez

Amount Raised

$1,945

 

389% Raised of $500 Goal

Donor Comments

Don Jones

Don Jones

DONATION: $250

4 months ago

Midge

Midge

DONATION: $50

5 months ago

Jeanie S

Jeanie S

DONATION: $20

5 months ago

Mary Jones

Mary Jones

DONATION: $25

Tribute to Landon Jones 5 months ago

Anonymous

Anonymous

DONATION: $30

Best wishes! 5 months ago

Vinny, Autumn, Camden, Landon, and Scarlett

Vinny, Autumn, Camden, Landon, and Scarlett

DONATION: $50

Good luck!! ♡♡ 5 months ago

Laura Hilliard

Laura Hilliard

DONATION: $20

Good luck Don 5 months ago

Anonymous

ANONYMOUS

DONATION: $25

Landon Jones 6 months ago

Anonymous

ANONYMOUS

DONATION: $25

Enjoy yourselves! 10 months ago