2017 Cure the Cycle Challenge
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118%
 

Goal $5,000.00

$5,900.00Raised

Why I Ride:  

Landon James Snyder - 12/19/2015 - 2/9/2017

Landon was born a healthy, 8 lb. baby boy on Decmber 19th, 2015. It was a joy to watch him grow alongside his big brother Bryce, who is 2 years older. When Landon was 2 months old he ended up in the hospital for what appeared to be labored breathing, however, we were released after 2 days when the respiratory specialist cleared him and said that he had no respiratory issues. Other than that episode, Landon only had normal baby health issues such as ear infections and colds and we never knew anything was wrong, as he grew and developed beyond what was expected for his age. He was an extremely happy baby and loved to eat anything and everything placed in front of him. He was curious and mischevious and constantly in to everything. He was the one that you could not take your eye off of for even one second.

In October of 2016, he got sick and started acting like he was having abdominal cramps and became very lethargic. We ended up taking him to his pediatrician who was concerned he was having an intestinal issue called intussusception and we went straight to the emergency room. After giving him an IV and running a multitude of tests over the course of 2 days, Landon was feeling better and we were released from the hospital without any real answers. A month later, right before Thanksgiving, the same process repeated itself; getting sick, having severe abdominal cramps, and becoming increasingly lethargic. We wound up in the ER again where they put him on an IV and again ran many gastrointestinal-focused tests. Once again, they found nothing wrong with his GI system, and we were released with no answers. We were referred to a child neurologist in the area and we made an appointment for as soon as they could get him in. In the meantime, Landon celebrated his 1st birthday with a Winter Onederland party, and then Christmas at home with his brother, mom, myself, and our dog Lucy. In January, we went to see the neurologist and they ran an EEG and an EKG on Landon and tested his motor skills / development. Everything looked normal, so he diagnosed him with cyclic vomiting syndrome, which is essentially a diagnosis of exclusion. The doctor sent us with some sedatives and a plan for the next time one of these "episodes" occurred. The thought is that cyclic vomiting syndrome is related to migraines and you want to sedate the patient so that they awaken feeling better. We didn't have to wait long as by the end of January Landon started the same pattern as before. As perscribed, we gave him the sedatives and the contacted the doctor because not much was changing and Landon had become increasingly lethargic. We were told to give him the suppository sedative, which we did, and Landon went completely unconcscious. He was breathing normally but was otherwise unresponsive. We were in contact with the neurologist, who assured us it was just the sedatives. By the next morning, Landon's breathing seemed more labored and he was posturing like he was having a seizure. We took him to the hospital and they told us that he had suffered a traumatic brain injury. Because the brain scan looked like the injury was caused by a lack of oxygen, which didn't match what we were telling them, the head doctor in the pediatric ICU decided to test the level of ammonia in his blood. This was the first time this test was ever run on Landon, and it showed extremely high levels of ammonia, which is toxic to the brain. Landon was transferred to Lucille Packard Children's hospital at Stanford where he spent the next 6 days fighting for his life through the brain swelling. Stephanie and I were with him as he took his last breath on Thursday, February 9th, 2017 at 7:47pm.

Ultimately, through genetic testing, it was determined that Landon suffered from N-acetylglutamate synthase deficiency (NAGS), an extremely rare urea cycle disorder that is inherited genetically. While NAGS is the rarest of the urea cycle disorders, it is also the only one that can be effectively "cured" with a daily medication if diagnosed in time. This heartbreaking revelation is why we feel that it is so important to spread awareness of these disorders to other parents and physicians, in hopes that it may help to save a precious life like Landon's in the future. 

Landon was the happiest child I've ever met, and his smile would light up any room that he was in. We all love him and miss him so much.

This is what I ride for.

  

Thank you for your support! Your donation is tax-deductible and 100% of your pledge goes to support the mission of the National Urea Cycle Disorders Foundation. For more information on UCDs, please visit the Foundation website at CureUCD.org.

Comments

  • Megan (about 23 hours ago)

    #love4landon

  • Jason (about a day ago)

    Sorry I couldn't be there this year. Next year for sure. Ride strong. You're in our thoughts.

  • Kyle (about a day ago)

    We'll love you forever, we'll like you for always, as long as we're living, our baby you'll be. We love you & miss you, Landon. Mommy, Daddy, & Bryce

  • Kristine (about a day ago)

    We love you all so very much!!! You are always in our hearts!!! Your Norway family, Kristine, Egil, Magnus, and Bear

  • Andrew (about 2 days ago)

    Love you guys! The Nicolai Family #love4landon

  • Alejandre (about 2 days ago)

    Our hearts go out to you and your family.

  • Brenda (about 2 days ago)

    You and your family are always in my thoughts.

  • Debora Kay (about 3 days ago)

    California

  • Jim and Olivia (about 3 days ago)

    In Landon's memory

  • Sue (about 5 days ago)

    Blessing

  • Rachelle (about 5 days ago)

    With love

  • David and Corryn (about a week ago)

    We miss Landon's big, bright smile! We love you all so much!! Ride hard and know we are proud of you! Love, the ONeills

  • Anonymous (about a week ago)

    Keep strong Kyle & Steph!

  • Adam (about a week ago)

    Love you all- The Pennell's

  • Paul and Jessica (about a week ago)

    We love you all so much and are cheering you on! -The Thomsens

  • Chun (about a week ago)

    You guys are a continued inspiration to us all! Love the Lees

  • Raymond (about a week ago)

    Love you Snyders!!

  • jalon (about 2 weeks ago)

    .

  • Tanis (about 2 weeks ago)

    We love you! Landon will be with you on your ride and so proud. All our love to you, Stephanie, Bryce and #love4Landon. Love Dad and Mom Snyder

  • Jason (about 2 weeks ago)

    Your are the man, Kyle! Ride on. Love to you and Steph. #Love4Landon

  • James (about 2 weeks ago)

    We love you bro... From James, Margot, Peyton and Mila

  • Yoram (about 2 weeks ago)

    With our warmest thoughts, the Bronickis

  • Doug (about 2 weeks ago)

    Keep you head up Kyle. You are stronger than you know.

  • Scott (about 2 weeks ago)

    Thinking of you and the family, and supporting your cause!

  • Anonymous (about 2 weeks ago)

    Go Kyle and Snyder Family! You can DO IT!

  • The (about 2 weeks ago)

    We love you guys. Landon, keep your eyes on Kyle. He may fall down once, and it should be pretty funny.

  • Anonymous (about 2 weeks ago)

    Nevada

  • Kim (about 2 weeks ago)

    Sending lots of love, Kyle! -Kim Gallagher

  • Anonymous (about 2 weeks ago)

    What a sweet little boy! I'm so sorry for your loss. Prayers for your family.

  • Jennifer (about 2 weeks ago)

    What a journey, Kyle! You are an inspiration. We love you all so much. Your cousins Jenny and Joe

  • Teri & Charles (about 3 weeks ago)

    Go Kyle! We love you so very much.

  • jessica (about 3 weeks ago)

    Sending all our love! -The Hardy Family

  • Heather (about 3 weeks ago)

    Sending love!

  • Michael (about 3 weeks ago)

    I Love you buddy!

  • Richard (about 3 weeks ago)

    Go Kyle!

  • Lisa (about 3 weeks ago)

    Love, Brad and Lisa

  • Jarod (about 3 weeks ago)

    Kyle, my heart hurts for you and your wife, but I'm uplifted by your dedication to this cause and helping others. Best, Jarod Stewart

  • Alan (about 3 weeks ago)

    Love and support from the McCaffreys

  • Melissa (about 3 weeks ago)

    We love you Landon #love4landon

  • Marci (about 3 weeks ago)

    #Love4Landon and love for Kyle, Stephanie & Bryce ??

  • Melissa (about 3 weeks ago)

    Lots of love for Landon and the Snyder family ?????? Francis family

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Number of pledges received: 47
Goal achievement: 118%
Number of page visits: 1334
Days since event: 1

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