This is Salias he is 1.5 years old. Despite having only been here for a short time so far, he has already had to be a warrior. 

When he was just 12 days old we were awakened by a shrill of a cry and when we pulled him out of the bassinet he was struggling to breathe. He turned completely blue multiple times and went unresponsive twice. Once at the hospital they diagnosed him with BRUE (Breif Resolved Unexplained Event).

Since then we have witnessed these events over and over again countless times. Doctors are not taking this seriously. Salias's uncle passed away from SIDS at just 4 months old and went through the same expirences prior. 

We have found out Salias has a very rare pressure induced mass in his throat. There are only 42 reported cases. They tell us there is not enough litature to know if that is the cause for his issues. 

He has gone through extensive testing and imagine so far with multiple abnormalities found but they claim are no cause for concern. 

We have finally heard back from other specialists who can do even further testing. But we still may need extenseve help with other specalists. We have been waiting since November and finally got an emergency appointment after having to perform CPR on Salias a few days prior. We have to travel across state for this one since we have used up all local and semi local resources. We may even need to go out of state in the future for specialists, but we cannot fly due to the mass in Salias's throat. No one can let us know if the pressure on a plane can cause it to swell which would result cutting off his airway for an extended period of time. We just want to find answers for our little boy. 

No parent should have to watch their child struggle time and time again to breathe and watch them turn blue or go unresponsive. Despite multiple hospital stays for these episodes doctoes are being so dismissive. We keep being told he may outgrow them but every time he reaches that age they just push it further. That is why we want to expand our horizons to actually help get Salias the care and diagnosis that he needs and deserves. 

To make matters more stressful his insurance has denied past appointments and testing due to not having an official diagnosis regarding his apneas. Next they kicked him off of insurance as if June 1st. I have tried everything to keep it. They told me if he was denied they would still make notes in his case to try and get an SRS to help to make sure we would still have something. However they want us to pay everything out of pocket but at a "reduced" price. We were also told they may deny more past services. They just updated his case to him having possible CHIP but we are waiting on an interview first. Based on extensive research it will not cover the care he needs. They may not cover his specialists, testing, diagnostics, and more. We are worried this will also affect his care going forward and prevent us from getting the help Salias needs. Especially because we now have another sleep study scheduled for August 31st 2025. The new pulminologist thinks his apneas have gotten worse as he should have outgrown them by now. She ordered a sleep study, put in a referral for Genetic Testing, a new ENT, and wants him to do a swallow study as well. If the sleep study shows any obstructed apenas (Especially from the mass in his troat) they will have no choice but to do surgery, they did not state the course of action if there are still central apneas shown (where his brain forgets to tell him to breathe) like it has in the past. She stated the genetics testing should help with diagnosing this as well. However now all of these appointments look like they will be either denied or completely out of pocket. We have had issues getting in with some spealsists as it is due to his previous insurance. Now we are afraid even more that he will be denied the care he needs.

In the mean time we have had to deal with these episodes and each one seemingly worse than the one prior. He still turns blue in his sleep amd you cannot see him breathing, luckily startling geting him to breathe again and you can see the color wash back over him. Some times like May 14th he will be fine then stumble, start to turn blue and be very stiff in my arms then continue turning darker blue and pruple from head to toe and go completely limp and unresponsive therefore needing CPR. These events can happen at any guven moment and each one is still as terrifying if not more than the ones prior. We are still beyond paranoid that we will not get him breathing again or if it goes unnoticed in his sleep.

We are hoping since we finally seem to have found a doctor who wants to get to the root cause and help prevent these events, that we can finally get Salias the help he needs and deserves. We just hope due to the unexpected and unfortunate events with his insurance we can still make sure he gets whatever help he needs.

Right now it feels like we have only gotten by with all of your help, prayers, and by the grace of God.

We are raising between $10k-$15k to cover expenses for everything upcoming as we have completely depleted our savings for Salias's care so far. Please find it in your heart to give whatever you can. 

 Thank you in advance for your generosity. We know you will help as the Lord enables and leads. 

Please and thank you so very much