2018 Cure the Cycle Challenge
Donate Now
74%
 

Goal $5,000.00

$3,675.00Raised

Why We 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 big brother Bryce, his mom, myself, 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 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 unconscious. 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. His mother, 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 dearly.

This is what we 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

  • Alan (about a day ago)

    From the McCaffreys’

  • David & Corryn (about 3 days ago)

    We miss you Landon

  • Gabler (about 5 days ago)

    We love you Snyder Family ???? #love4landon

  • James (about a week ago)

    Love for Landon, love to all??????????

  • Joshua (about a week ago)

    #love4landon

  • Paul (about a week ago)

    We miss you, Landon, and love you all. XO, The Thomsen Family

  • Jim (about a week ago)

    We love you and miss you, Landon! - Nana and Papa

  • Jeremy and Melissa (about a week ago)

    The Silva's love you and miss you Landon

  • Kyle, Stephanie, & Bryce (about a week ago)

    We Love You Bubba!

  • Teri (about a week ago)

    We love you 4 ever??. Aunt Teri and Uncle Charles

  • Robert (about a week ago)

    We love you Landon!

  • Tanis (about a week ago)

    Landon will be with you as you ride for the cure. We love you with all our hearts . Love Dad and Mom Snyder. #love4landon

  • Rex (about 2 weeks ago)

    Go Team Landon

  • Lindsey and Andy (about 2 weeks ago)

    Thinking of you all.

  • Baylee (about 3 weeks ago)

    Love4Landon ??

  • Shelby, Casey & Stella (about 3 weeks ago)

    ????

  • The (about 3 weeks ago)

    Love4Landon forever and always.

  • Andrew (about 3 weeks ago)

    Love you guys! #love4landon

  • Anonymous (about 3 weeks ago)

    All our love to the Synders, The Wolf-Rays

  • Laura (about 3 weeks ago)

    Love 4 Landon, now and always.

  • Sarah (about 3 weeks ago)

    Go Snyder! Ride for Landon!

  • Elton (about 4 weeks ago)

    L4L

My Status
Number of pledges received: 32
Goal achievement: 74%
Number of page visits: 1271
Days since event: 2
This is the general team page for 'Team Landon'

Spread the Word!

Share the link:
http://curethecycle.dojiggy.com/teamlandon
"I expect to pass through life but once. If, therefore, there can be any kindness I can show, or any good things I can do to any fellow human being, let me do it now, and not defer it or neglect it, a"
— William Penn
v4.2.2 20180817-180832 PROD-QH5K-ece6