Healthcare for Hereditary Amyloidosis Help

Hello my name is Stephanie, I usually don't ask for help, but my mom, my sister and myself were diagnosed with this rare  genetic disease called Hereditary Amyloidosis. We are having a lot of problems getting the treatment and medications we need to slow this disease down so we can live a longer life. There are certain treatments and medications we need but we cannot get the referrals we need for the specialist and the insurance companies will not cover the doctor's or treatments we need.Hereditary Amyloidosis affects many different parts of the body and there is no cure. Hereditary Amyloidosis is a bad protein that is produced in your liver and spreads to other organs in the body. People with this type, have to either have a liver transplant or heart transplant or both. Once you are diagnosed they give you an average of 7-12 years without treatment. I was diagnosed in 2019 3 years ago and my sister and mom were diagnosed in 2016. It is affecting the nerves in our legs and lower back,the pain can be horrible to where we cant walk or get out of bed. Its affecting our stomach to where I can barely eat and I have lost over 80 pounds in a year and my sister over a 100 pounds. We have to have test done to make sure it is not affecting our hearts.. This disease is so rare that a lot of people do not know about it or understand what it is doing to us.There are days where i get dizzy and lose my balance and fall. Since i haven't been able to see the right doctor's i am far behind with testing to know how bad the disease is progressing. The type we have is call Hereditary amyloidosis and is also know as the monster. I have a 19 year old daughter and  3 nephews that have a 50% change of having it and will need to be tested as well.  We have been fighting with the insurance company for months it is getting hard.  There is doctor's we can see at the University of Chicago but again the insurance company keeps Turing it down..We hate asking for help but we are out of options at this point. Any donation will help. I just want us to get the help we need so we can live a longer life. Thank you for taking the time to read this and thank you for showing your love and support ❤ it means the world to us. I pray they can find a cure for this horrible disease. All donations will go for doctor's, testing, treatment and medications for me, my mom and my sister. Please donate or share every little bit helps.