Remmy's rare genetic disorder 6p21.33 deletion

This is my son Remmy he is a 9-year-old from WI. Remmy has a very rare genetic disorder called chromosome 6p21.33 deletion. Since this is so rare there isn't much research on it. Remmy started his first 3 years of his life working with birth to three to help with cognitive and speech delays and sensory issues. He also suffers from a seizure disorder, constant hand tremors which affect his ability to write and perform small motor skills, dyslexia, visual and audio processing. For the next 3 years of his life, he was in and out of Children's Hospital of Wisconsin in Milwaukee. Test after test was performed to figure out what he has. The older Remmy gets the more symptoms come out. Recently, Remmy is experiencing memory recall, change in sentence structure, and extreme restless sleep including constant muscle jerking and twitching. With many abnormal EEG's his medication doses are constantly changing. All this is hindering is education. He is 2 years behind other kiddos his age. Home life is difficult at times with normal daily living cares such as dressing, bathing, and brushing his teeth. Remmy will be getting a referral to Children's Hospital in Cincinnati for a second opinion. All this testing and hospital stays from constant new symptoms and changes isn't easy.  The bills are adding up on top of missing work. My husband and I both work 40 hours a week with a 5 and 13 year old at home and one in the first year of college. We don't like asking for help or handouts. We are now at a point where we can't keep up all of this. We have had many people tell us to set up a gofundme page, we been very hesitant because we work extremely hard for what we have. We are asking for some help to pay off medical debt and to get caught back up. I would also like to figure out how to start a foundation or more research for this genetic disorder.