Biography

My son was diagnosed with type 1 at 14 months old, following a pneumonia diagnosis(aren’t cruise ships fun), after repeated attempts to get doctors in pennsylvania to give us something beyond hypertonia(just the beginning of the list of failures by medical “professionals” in PA and NY over the years. We hit the ground rolling, came up with exercises to strengthen his lungs as we were told type 1 usually die from respiratory illness(pennsylvania doctors also told us stuff like “he’ll never see a 2nd birthday” “let’s give him a tracheotomy and g-tube because that’s what type 1s get”(no testing nor actual reason for any of that), “just leave him here(permanently) and we’ll ‘take care of him'(whatever that means)”.  I have a long standing disgust of all medical professionals trained in PA as it seems they’re still teaching them to treat the disease not the patient, as if every child was the same. As we celebrate his birthday every year, I give a big F U to pennsylvania. (I have nothing against people from PA and love Rocky, but eagle fans, we will not be friends).

He is a happy, healthy, well raised 13 year old little boy, extremely smart, funny, talkative and charming(when he wants to be). I service/repair medical equipment for a living and will be happy to answer any questions that I can on equipment usage, maintenance, troubleshooting, etc. We have navigated this crazy health system b/w PA and NY for his entire life and do everything we can to not let him go back into a PICU. No Covid Vax for this kid, keep your poisons away.

Am happy to help anyone we can(even eagle fans) navigate SMA and hospital life

ProTip, bring your own suction for any hospital visits (PICU wall suction is too low to be effective to thicker secretions. I promise this will be a game changer)and don’t be afraid to take over care in the PICU. nurses/doctors and parents especially are 1 team, and you should be in charge b/c you know your child best!! you have patient and parental rights!!