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Giving Teddy a chance at an even brighter future!

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For those who are new to our story, Teddy is truly a bright light in this world. On paper, he was born a 2lb 15oz preemie and has VaCTERL Association, Caudal Regression Syndrome, Hydrocephalus, Level 3 Non-verbal Autism, Global Developmental Delays, and Apraxia. He spent his first 6 months fighting for his life and the next 6.5 years fighting for his quality of life. He has had significant medical trauma and his late diagnosed hydrocephalus has led to some global damage to his brain. But in real life, Teddy is SO MUCH MORE than what his 1000+ page medical record shows. He has proven every prediction wrong. He has shown time and time again that he is in charge of his story, not the doctors, not the therapist, and not even us. He is ridiculously smart (a little too smart for his own good), insanely strong, hilarious, curious, sweet, loving, stubborn, beautiful, and has the absolute best smile and laugh you will ever hear. There is not a person who has crossed his path that did not want to be a part of his story. You can read Teddy's full story at www.narratingteddysremarkablelife.com.

Teddy has had a significant amount of medical trauma. Born at 32 weeks, he immediately was placed on a breathing tube and went into surgery to repair his airway and receive a G-Tube at 16 hrs old and was only 2lbs 15oz and 14 inches long. He spent the next 9 months fighting, surviving, and enduring multiple 10+ hour surgeries and countless procedures. With every passing day, month, and year, new diagnoses and new challenges emerged, with the most recent being a missed diagnosis of hydrocephalus and brain surgery at age 5. The neurosurgeon told us, that while it is impossible to say exactly how much brain damage occurred due to the late diagnosis of hydrocephalus (a story for a different post), there is likely damage and due to his age there was limited natural repair likely to occur. All of this trauma and damage related to the hydrocephalus has led to many of his underlying challenges like Autism, Global Developmental Delays, Sensory Processing Disorder, and Apraxia.

These challenges are the things that will hinder his future chance of independence. Teddy is ridiculously smart and amazing, but needs significant one-on-one support for almost all things. When he puts his mind to something, he will truly blow you away with what he is able to accomplish, but the day-to-day skills he is not able to do yet without prompting and significant assistance. He also does not eat by mouth, due to his medical history and oral aversions. We know he will accomplish great things in his life, but he needs all the tools and support to ensure he has the opportunity to do those things.

We have changed our mindset at least 5 times about starting this GoFundMe, but the more we imagine Teddy’s future, the more I want to give him the opportunity to be as successful as he plans to be. We have never approached Teddy’s life focused on what he couldn’t do. We have always done everything we could to give him the tools and support he needs to succeed. This leads me to the current opportunity of receiving the NeuroCytonix treatment we have for Teddy. While Teddy has not had one point of significant injury, the accumulation of all of Teddy’s medical trauma has led to injury. I jumped into research on NeuroCytonix and was so amazed by the technology and the results they are seeing. I reached out to them and sent them Teddy’s history and images and he qualifies for the treatment and may see benefits from it. The catch is that it is new, which means it is not FDA approved (although pending approval hopefully this year) and not covered by insurance. Even if it is approved, it will likely have limited approval by insurance for a long time. While we could wait and hope that happens, when it comes to healing the brain, the younger a person is the better. If we could make this happen on our own, we 100% would, but the catch to amazing new advances in medicine is that it is expensive. In this case $55,000+ expensive.

NeuroCytonix. Inc. is a biomedical technology company focused on developing innovative revolutionary treatments for neurodegenerative diseases such as cerebral palsy, stroke, and traumatic brain injuries. The company was founded in 2017 by Dr. J. Roberto Trujillo to find cures for incurable neurological diseases. The company’s corporate headquarters are in Rockville, Maryland, USA near the US National Institutes of Health (NIH). In 2018, they established a clinical center in Monterrey, Mexico, in compliance with the FDA rules of “Good Clinical Practice” (GCP).

Neurodegenerative diseases are a condition that affects brain cells known as neurons. Communication between the brain and the rest of the body is facilitated by neurons. When neurons are damaged, there is a loss of brain activity that results in issues with movement and cognitive function. Neurodegenerative damage to distinct parts of the brain creates different symptoms. The NeuroCytonix technology utilizes a combination of magnetic fields and radiofrequency waves to stimulate brain regeneration and restore the broken neural network. The protocols were developed to improve the quality of life of patients while the brain starts to heal.

The NeuroCytonix program is a 28 day treatment protocol that is customized specifically for each individual person based on MRI and DTI tractography analysis done on the first day of treatment. Then the individual has 28 consecutive days of Cytotron (magnetic and radiofrequency waves) treatment for 1 hour each day. At the end of the cycle, an MRI and DTI are redone to show regeneration and restoration of broken neural networks. NeuroCytonix has completed a double blind study with the FDA for Cerebral Palsy patients, with great success. They have seen improvements in patients with a wide variety of neurodegenerative diseases and I recommend going to https://www.neurocytonix.com/ to learn more. Specifically for kiddos similar to Teddy they have seen better cognition (school), improvements in language, socialization, and fine motor skills. All of these areas are limiting factors to Teddy having future independence and providing him with the opportunity to regrow these neural pathways would be amazing. This treatment is NOT a miracle pill and will not magically make Teddy neurotypical. What it hopefully do is give him the support and tools needed to continue to make progress and accomplish the things he works so hard to do!

This leads me to our decision to start the GoFundMe. As mentioned above, the treatment is $55,000 plus there is a month of living expenses in Monterey, Mexico and being off work. I know this seems extreme and in some ways it is, but to give Teddy the chance to gain independence is worth every penny. Unfortunately due to Teddy’s schedule and medical and therapy needs, I am not able to work full time and haven’t since Teddy’s birth. We have looked at every way possible to make this happen ourselves, but ultimately we just can’t make it happen by ourselves without digging a hole we might not be able to get out of. So that brought us to decide to set up the GoFundMe. If you know us, then you know just how difficult it is for us to ask for this kind of support. We are DEFINITELY a "we will figure it out" sort of people, but this is too big and too important to wait years to try and do for him. We are in no way expecting to hit our goal or want anyone to feel obligated to donate if they are unable. If you are in a position to donate, then we are super grateful and so very thankful. You are not, we truly understand (as you can by why we are starting this), but would be grateful for you to share and send positive thoughts our way.

All money donated will be used directly for the NeuroCytonix treatment. We are hoping to schedule the treatment to take place no later than June of 2024, but it is dependent on when we are able to raise the funds. We appreciate all of your love and support!
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Donations 

  • Anonymous
    • $125 
    • 8 hrs
  • Carrie Topham
    • $100 
    • 1 d
  • Anonymous
    • $250 
    • 1 d
  • David O'Brien
    • $250 
    • 2 mos
  • Cecil Wilder
    • $100 
    • 3 mos
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Organizer

Katie Waller
Organizer
Goshen, KY

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