All Updates
Dec 18, 2025
Check out what's new with us!
First I want to highlight the two raffles that were held for us by ...
Nov 30, 2025
November was rough!
Mack has been sick since the 1st of November with Rhino virus which...
Nov 06, 2025
hospital admission and other updates
We got home from Mack’s admission for a cold yesterday afternoon. w...
Oct 16, 2025
Hallelujah!
Praise God for what we experienced in the last 48 hours.My dear fri...
Sep 29, 2025
Frequently asked questions:
Hopefully this gives everyone a well rounded perspective about our ...
Sep 21, 2025
Mack's first church service!
Today Blake and I made our way back to Crossroads in Doylestown and...
Sep 20, 2025
NeuroSolutions cost.
After exploring a Cleveland Clinic neurologist we have decided to s...
Sep 07, 2025
Mack is off of vigabatrin and we are going to a new neuro.
Mack's last day on vigabatrin was the 3rd. Since then we have notic...
Aug 21, 2025
The wean is almost over and all about our nurses!
Mack is going to be off of vigabatrin on 8/28. As the wean progress...
Jul 30, 2025
We are finally weaning vigabatrin
After a lot persistence and MyChart messages we have a wean schedul...
Jul 09, 2025
Funds utilized, and we saw the Naturopath!
We took Mack to see Dr. Stern at Pinnacle Health Family Chiropracti...
Jul 03, 2025
Home from Gtube surgery
Surgery went fantastic and Mack was perfectly stable during the who...
Jul 01, 2025
Neurosolutions consultation scheduled!
We are officially scheduled to have a telehealth intake consultatio...
Jun 29, 2025
Gtube Surgery = goodbye NGtube!
Mack will be undergoing a Gtube surgery Wednesday 7/2 after his FEE...
Jun 29, 2025
Mack’s other chronic health issues
Macks diagnosis list is lengthy to say the least, and began the sec...
Jun 29, 2025
How we got here
Mack was diagnosed with 2 genetic conditions after being admitted t...
Support Registry
Browse all the options to help, in one place.