Welcome to Tyler's Triumphs... A fundraiser to bring health back to our little boy.
Tyler will be three years old in October, and for such a young little guy, he has accumulated an alphabet soup of diagnoses in his short life. He has chronic food allergies, reactions to medications and vaccinations, severe GI illness, pancreatic insufficiency, failure to thrive, autoimmune thyroid abnormalities and a failing immune system. At 4 months old, Tyler's metabolic systems began shutting down on him, one by one. As parents, we had no idea why this was happening to our son. Feeling helpless and scared, we ran him to doctors locally trying to help him, as we watched our little boy suffer from chronic infections, diarrhea, vomiting, weight loss, autoimmune and neurological dysfunction. We were losing him... he stopped eating, he stopped looking at us, he stopped wanting to be touched or held... He was regressing. By 15 months old, Tyler was diagnosed with a mild Autism Spectrum Disorder, PDD-NOS.
It's estimated that treating a child with an Autism Spectrum Disorder can cost a family upwards of $50,000 per year. We found that to be true in our home as well. Add to that Tyler's chronic health conditions and it only goes up from there. We have taken out loans, maxed out credit cards, emptied 401Ks and are short selling our home in order to provide ongoing treatment for Ty. Medically speaking, Tyler has not gotten better. Because local doctors were not able to help our son, we traveled to specialists in New York, New Jersey, Melbourne and New Orleans. We began feeding therapy to help him learn to eat again, occupational therapy for sensory and motor planning issues, we started monthly immunoglobulin infusions to keep him well, we completely changed his diet and treated him medically. We scoured medical research, bringing us to some of the best and brightest doctors in the world, doing anything we could to bring our little boy back... It feels like we've run a marathon! After almost 3 years, his doctors have finally determined "why" Tyler has not gotten better. Tyler has a Disorder of Mitochondrial Metabolism, or a Mitochondrial Disease. Mitochondrial disorders result from failures of the mitochondria, specialized compartments present in every cell of the body, that are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. We are fundraising to help Tyler to receive the life saving treatment that he needs to ensure he can have the best chance possible in life. Here's how your donations will help:
Mitochondrial Specialist, Dr. Richard Frye:
Tyler needs to see a Specialist in Childhood Mitochondrial Disorders, Dr. Richard Frye. He works at Arkansas Children's Hospital Research Institute with metabolically complex children, just like Tyler. Because there are literally hundreds of mitochondrial disorders, Dr. Frye will help us to determine which type of mitochondrial disorder Tyler has and help dictate the most appropriate treatment plan.
Hyperbaric Oxygen Therapy:
Tyler also needs to continue to receive Hyperbaric Oxygen Therapy. Due to the tremendous success we have had in the past, coupled with Tyler's ongoing declining laboratory findings, we need to increase the frequency in which Tyler receives HBOT therapy. We can do this in one of two ways:
1. Schedule weekly appointments in an existing HBOT Clinic
2. Purchase a mHBOT chamber (Vitaeris 320) for daily in-home use
** View video of mHBOT for in home use in Mito Disorders.
Thank you doesn't even begin to cover how much your generosity and support mean to our family. Unfortunately, the cost of Tyler's current treatment limits our ability to fund this treatment. You will be helping Tyler to get the life changing treatment he needs. And every little bit helps! You can truly make a big difference in one amazing little boy's life! On this journey, we've been told by doctors and therapists alike, that Tyler is "a miracle child" due to the tremendous developmental progress he's made, in spite of his many medical challenges. To know Tyler is to know a sweet, spunky, determined and funny little boy who is so deserving of a chance to be a healthy kid. Without a doubt, he is our little fighter, who has inspired us and taught us far more than we could ever have hoped to teach him in the last 2.5 years. We love him dearly and can't wait to take these next steps in our quest to wellness. Here's to helping Tyler triumph, to regaining his health and to never giving up hope!
To learn more about Tyler's condition:
Learn more about mitochondrial disorders by clicking here, here and here.
Here is a link to HBOT treatment in mitochondrial disorders.
Here is a link to Dr. Frye's latest study on Mitochondrial Disorders.
With love and gratitude,
DonationsSee top donations
- Ursula Brutton
- Michael Esquinaldo
- Ursula Brutton
- Ursula Brutton
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