2019 Cure the Cycle Challenge
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84%
 

Goal $5,000.00

$4,205.00Raised

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. Landon 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 it's hard to find a picture of him not smiling. He also was a big boy, and loved to eat anything and everything placed in front of him.

In October of 2016, he got sick and started acting like he was having stomach 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 what seemed to be 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 again with no answers. We were referred to a child neurologist in the area and we made an appointment as soon as we could. In the meantime, Landon celebrated his 1st birthday with a Winter Onederland party, and then Christmas at home with his brother Bryce, his Mom and Dad, and our beagle, 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 the "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. We gave him the sedatives and contacted the doctor because not much was changing and Landon had become increasingly lethargic. We were told to give him the suppository, 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 straight 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 tot he brain, and he had been breathing normally, the head of 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 until they could assess the true damage after the swelling in his brain had stopped. The brain injury that he suffered was irrecoverable. The doctors let us dress him in his pajamas, and be with him until he took his last breath on 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 treated effectively with a daily medication. 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.

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Comments

  • Melissa (about 2 hours ago)

    We love you Snyder family!

  • Anonymous (about 2 hours ago)

    We love you Snyders and miss our friend Landon!

  • Anonymous (about 17 hours ago)

    NV

  • Skye (about 18 hours ago)

    Love for Landon always and forever. Wish we could watch you grow up.

  • Jessica (about 19 hours ago)

    All our love!

  • Raymond (about a day ago)

    💙 you Snyders

  • The (about 3 days ago)

    We miss you Landon!

  • Josh (about 3 days ago)

    ♥️

  • Paul and Jessica (about 3 days ago)

    Landon and all of you are always in our hearts. We love you guys. -Paul, Jess, EKT, and CJT

  • Andrew (about 5 days ago)

    Go Team Landon! The Nicolai crew will be cheering for you!

  • Jessica (about 6 days ago)

    We love you guys! Love the Hardy’s

  • Tanis (about a week ago)

    Go Team Landon! Landon is so proud that his Dad rides for the cure. We love you all very much! Love Pappy and Grammy. #Love4Landon

  • Marci and Kevin (about a week ago)

    We love you Landon

  • Jim (about a week ago)

    We miss you always, love nana and papa

  • David (about 2 weeks ago)

    Go get 'em Kyle!

  • Brooke (about 2 weeks ago)

    We love you!

  • Melissa (about 2 weeks ago)

    Kyle & Stephanie, Thinking of you both! Have a great ride in honor of Landon. xo, Mel

  • Chun and Karmen (about 2 weeks ago)

    NV

  • Alan (about 3 weeks ago)

    Love and support from the McCaffrey family

  • Kyle (about 3 weeks ago)

    We love you and miss you, Landon!

My Status
Number of pledges received: 31
Goal achievement: 84%
Number of page visits: 527
Days since event: 0
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