Help Nyles with his journey

Nyles was born with a rare disease called Leighs.  He has very low muscle tone. Which means he cant sit up or walk or crawl.  Although Nyles does receive PT right now his head control is still behind.  In July, Nyles started having infantile spasms which is on the seizure spectrum.  We have had 3 EEG's so far and his Neurologist added a new seizure medication.  I really don't like asking people for money because it was my choice to have a baby.  I was not aware that he would have special needs nor did I know that it would cost me an arm and a leg to feed him or care for him.  Because of the low muscle tone his formula is $77.00 a week.  Our insurance doesnt feel that Nyles condition is bad enough to cover this, even though the condition specifically says it is a failure to thrive.  His adaptive chair is $500.00.  His bathtub seat is $400.00.  Now we do get some help but the county for Help me Grow only can give us help up to $2500.00.  Once I hit that mark, I have no other resources.  You don't have to donate anything if you just want to read and give me some ideas on how to get assistance.  I do work a full time job so we dont qualify for anymore assistance through the state.  I work as much as I can and thank god I work for a company that allows me to make up hours if I miss hours due to Nyles multiple visits to the hospital.  We also go to Akron right now every three months which is an extra $150.00 round trip in gas.  Once the test medication starts, I have been told that they will help us by providing gas cards but until then, it comes out of our pocket.  We are working doing our best to maintain our household and care for Nyles the best we can and it is very hard.  I don't like to ask for help so if you could tell me how to find some help that would work.  I appreciate your thoughts.   I am doing this because my aunt suggested it to help us a little.