Help Cure Trevor

Hello, my name is Crystal, and I am the mother of an AMAZING little trooper named Trevor. Trevor is currently 6 years old. For over 5 years, Trevor had been a medical mystery to doctors. He has been in and out of the hospital since the day he was born. Issue after issue, diagnosis after diagnosis. We have connections at 5 MAJOR children's hospitals, including the Mayo Clinic in Rochester, MN. Our concerns have been dismissed over and over again. The diagnoses didn't add up. He's had too much going on for it all not to be connected somehow. We have tried our hardest as parents to do everything in our power to protect Trevor from the world around him and keep him safe. Only to discover it's not the world we have to protect him from; it is his own body. After fighting and fighting for genetic testing, something to tie all of the symptoms together, we finally have an answer. And now, we are asking the world to help us save our son from an extremely rare genetic disease caused by a mutation of the TECPR2 gene. This disease is so rare, it is less than 1 in 1,000,000! According to the specialist, there are currently only 4 cases here in the US and only maybe 10 cases in total worldwide. Trevor is the first person to be diagnosed with this disease the way he has it. He has not only a mutation but also a deletion. This disease has just recently been discovered. The official name we were given was Hereditary Sensory and Autonomic Neuropathy Type 9 with developmental delay, HSAN9 for short. However, since meeting with the specialist, we have been informed that this is not the correct name for what Trevor has. His disease is so rare that it doesn't yet have a name. It is only known as TECPR2 disease or deficiency. It has symptoms similar to HSAN9 but is not entirely the same.

TECPR2 is a neurodegenerative disease that causes paralysis throughout the entire body with severely disordered breathing (beginning at night and slowly making its way to daytime), leading to mechanical ventilation 24/7. Other symptoms include the lack of pain sensation. The ability to not feel pain may seem like a superpower, for lack of better words, but for a developmentally challenged, NON-VERBAL child, this can be incredibly dangerous. Trevor's brain just doesn't tell him to stop when it should. There are no defenses, reflexes, or indicators telling him not to do something that causes pain.

We have been informed that if a cure is not found very quickly, Trevor will pass away due to respiratory failure as his lungs will be paralyzed, damaged by an infection that he won't be able to fight off, or his brain will simply "forget" to remind his lungs to breath. He currently uses a special ASV BiPAP machine at night as he only takes 6-8 breaths a minute without it and despite it normally only being prescribed to adults, it is the only machine that works for his condition. His brain doesn't tell his body that it needs to breathe. The communication from the brain to the diaphragm is lost, and he doesn't have the normal fail-safes such as rising CO2 levels or heart rate increase that we all have. The built-in alarms to "wake up" our reflex to breathe when our oxygen level gets too low. The damage in his brain caused by having this disease has destroyed those nerves that send the correct signals to set off those alarm systems. On numerous occasions, Trevor's oxygen levels dropped into the 50s before he would take another breath.

We are running out of time! WE NEED YOUR HELP!

A Florida doctor named Dr. Berry Byrne has dedicated his life to finding a cure for this disease. However, the costs of finding a cure and genetic therapy are tremendous! Over 2 MILLION dollars, and that's just to start! The progress made with gene therapy will also help those with ALS, Alzheimer's, Dementia, and who knows what other disorders.

We are desperate! With each passing day, his brain degenerates more and more. Every day he loses more of what makes him HIM. Please help us find a cure before time runs out! Any donations are so very much appreciated! If everyone who saw this page donated just $1, it would help our family TREMENDOUSLY!

Please help us save our little boy from this horrible diagnosis!

Any proceeds will go directly to fund research, pay for any medical expenses that insurance does not cover, travel expenses to see the specialists we need to see down in Florida, as well as therapy equipment and daily living aids to keep his body and muscles as strong as possible for as long as possible.

We need your help now more than ever!

For more information, please email HELP CURE TREVOR @ GMAIL . COM (NO SPACES!)

I will be happy to answer any other questions anyone has.

You may also search #HELPCURETREVOR on Facebook, TicTok, and YouTube.

THANK YOU!

"Together we fight for Trevor's tomorrow!!!"