Kyle started feeling very slight dificulty saying some words in November of 2020. No one could hear this and all medical check ups were perfect so it was written off to stress. Late February of 2021 the issue had continued to worsen so he started seeing Dr's and various tests such as an MRI and bloodwork. everything came back perlectly healthy. On March 25th he saw an ENT that said he believed it was bulbar onset ALS, a rapid death sentance. He was sent to 6 different specialists over the next 3 weeks who all agreed that Kyle did NOT have ALS. But as symtoms increased and many more Dr. visits finally a diagnosis and verified bulbar onset ALS on July 16th of 2021.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease, is a progressive, degenerative disease that destroys the nerve cells that control voluntary muscle movement. These cells, called "motor neurons," run from the brain through the brainstem or spinal cord to muscles that control movement in the arms, legs, chest, throat and mouth. In people with ALS, these cells die off, causing the muscle tissues to waste away. ALS does not affect a person's sensory functions or mental faculties. Other, nonmotor neurons, such as sensory neurons that bring information from sense organs to the brain, remain healthy. There are 2 types of ALS, limb onset which begins in the legs and arms. And bulbar which begins in the mout. Bulbar is a faster acting form with a typical life span of 1 1/2 - 2 years.
ALS is a terminal disease, so there is no cure and is 100% fatal. Little has been done in research for a cure until just recently. We are working with several trials to help one day find a cure for what has been named "the cruelest disease".