Any stories of how it's effected you?

My story
My small family consist of my wife and son. My son has a metabolic disorder called Propionic Acidemia. He was born with it and it basically does not allow his body to process certain amino acids in protein. There is no cure and the only treatment is a handful of meds and diet restrictions. Complicated diet that has to be tweaked to give him enough protein to grow and calories to give him energy to play and be normal. He does not eat anything by mouth and is completely G-tube fed which has turned out to be the norm for most kids like him.

He was born healthy and passed all the test at the hospital. A couple weeks later he was starting to slide and we noticed but doctors were convinced we were be over worried first time parents. At 5 weeks old he started having seizures. They were very mild and not obvious but I assumed the worst. Doctors again told us that we were being over worried first time parents. We took him to Kosair anyway and he had 7 that day.

We spent weeks in the hospital. Multiple suspected diagnose and ICU. We thought we would lose him so many times while we were there. I prayed like I have never prayed in my life. I cried like I have never cried in my life. He never got back to 100% that first hospital stay but was stable and we eventually were told to take him home and enjoy him.
Which was heartbreaking to hear and we did.

A few days later we received a call and were told that it was confirmed he had Propionic Acidemia from a muscle biopsy sent to a lab in California. We were relieved but had no idea what the hell was next. What was next was a learning curve of a roller coaster ride for the last 17 years.

We became lab scientist, doctors, super mom and super dad. We became caregivers and still managed to work full time jobs with 12hr overtime days. We would get depressed and worry then become happy and enjoy the little things. We had to learn to balance regular people life with dealing with a kid with a weakened immune system. A immune system that any normal virus could take his life. We battled Flu's, Stomach bugs, colds, Streph, Swine flu and a number of other not so normal fungus and bacteria over the last 17 years. He went to school for 2 years. First year he made it 15 days total all year with hospital stays in between. The second year we thought maybe his immune system will catch up and he made it until almost thanksgiving. We spend almost 20 days in the hospital with the stomach flu that year and we knew it was in the school before he got it. So we decided to home school.

Fast forward through 17 years and what we have learned. We could have invented the term social distancing. We always weighed the risk compared to reward for anything he got to do. We are avid hand washers. We don't always get to do birthdays or holidays on time and when we do they are small gatherings. We don't always get to do funerals and when I decided that it was a big deal for our family that didn't understand. But funerals are breeding grounds because everyone is hugging and crying and just touching each other. We work cautiously, clean our work area and always mindful of not touching our face, nose or mouth. Try not to have lunch when everyone else will be in the break rooms. Don't share foods and rarely participate in free for all food gatherings at work. We tried to be very open about what we were dealing with so that our coworkers could let us know when they were sick and had to come to work so we would stay away from them. During Flu season we quarantined ourselves upstairs anytime we felt just a runny nose or cough. We actually bought a house with an upstairs entrance just so we would do this. We stopped going to ballgames, movies, out to eat or any mass gatherings during the winter. There are many other things I am sure I have left off here but you get the point.

Now comes Covid-19. There is no doubt that if he gets this he will probably no longer be with us. If my wife and I get it we won't be able to take care of him. I hope those of you that think this is not real, a hoax, only effects those with underlying disease or older adults that have made bad health decisions their whole life and on their last leg read my story and at least put yourself in my shoes. Please think about people like me with this story. I have fought like hell to give this kid the best life I can under conditions most of you would have never had to deal with. Now you know.

Please be safe and know that life is still pretty **** good without going to the movies and ballgames. There will be a time you will be able to do those things again. Just remember you are doing it for people like me and my son. I would also like for you all to join the Mask4All movement. I wear a mask to protect you and you wear it to protect me.

Thanks and God Bless,
Dave