Even as I write this very long post (sorry), I have changed my mind at least 5 times about starting this GoFundMe, but the more I 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. I have never needed Teddy to walk, talk, eat, or be independent. I truly believe that Teddy is meant to be exactly who he is meant to be. He can’t speak, but he communicates with us in other ways. We were told he would likely never walk, and that was perfectly fine, but one day I looked up during a therapy session and he was taking his 1st independent steps towards me. And while he has taken a few bites of food off and on over the years, he doesn’t like it and that is okay, because the g-tube gives him all the nutrition he needs. He isn’t able to complete life skills independently, but that is ok because I don’t mind getting him dressed or helping him bathe. But Teddy is a fighter. Just when you think he will never be able to do something on his own, he starts doing it one day like he has done it all his life. This is proof that deep down he wants to do these things, even when they seem impossible. He just needs the tools, support, and space to do it on his own time and at his own pace. We are constantly searching for those tools to help him reach his goals and one potentially groundbreaking tool is NeuroCytonix.
Before I get into the details of the NeuroCytonix treatment we hope to get Teddy, I want to give you a little perspective of Teddy’s current needs. A little over a year ago, a new friend made a passing comment that sent me into a bit of a spiral. In passing conversation she said, “They are like you and their son will likely need to live with them the rest of their lives.” Up until this moment, I had never thought about Teddy’s future in this way. I had this amazing little kid in front of me, that every day was doing remarkable things we never thought possible, and we relished in the present and never focused on the things he couldn’t do. But that day when my friend made the completely innocent and most likely true comment, it caught my breath and every day after that I began to spend time worrying about the future, something I had never really done before. It also made me realize that someone could look at my son they barely knew and immediately decide his future. This beautiful boy, who had defied all the odds, was seen by others as someone who could never have independence. I knew then that we needed to look for opportunities to try and give Teddy the tools he needed to continue to prove everyone wrong and do the things that others say are impossible.
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 only 2lbs 15oz and 14 inches long. He spent the next 9 months fighting, surviving, enduring multiple 10+ hour surgeries and countless procedures. With every passing day, month, 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 is completely non-verbal but is learning to communicate in different ways and we are working hard getting him to use a communication device. 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.
This leads me to the current opportunity of receiving the NeuroCytonix treatment we have for Teddy. I follow a family who experienced an unthinkable tragedy when her children nearly drowned, and one suffered a severe traumatic brain injury. His mother has thrown herself into finding treatments that will help his brain repair. Every time she posts something new, I wish it was something we could try with Teddy. I research everything she shares and honestly if we had the funds and time, I would do it all. While Teddy has not had one point of significant injury, the accumulation of all of Teddy’s medical trauma has led to injury. The most recent treatment of NeuroCytonix she has done with her son though immediately felt like something special. I jumped into research 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 the combination of magnetic fields and radiofrequency waves to stimulate brain regeneration and restore the broken neural network. The protocols 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 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 will 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, medical and therapy needs, I am not able to work full time and haven’t since Teddy’s birth. Then last year we made the tough, but super important decision to move so we could get Teddy into a better school district. If you have been following the housing market, then you know we have no borrowing power right now. We have looked at every way possible to make this happen ourselves and our families are supporting us in every way they are able, 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 deciding 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 feel unworthy of asking 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 wanting 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. If 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.
So as hard as it is to know there are people we don’t know now reading our story, please feel free to share our GoFundMe link and also this blog. Any and all money raised will be specifically used for Teddy’s treatment and needs. I will be posting short updates on the GoFundMe page, but I have a goal to post Teddy’s story at least weekly and I will do my best to meet that goal. The posts will be a mix of his past story and current cuteness. Thank you so much for all your love and support and our GoFundMe can be found at: https://gofund.me/e3ac7a57