Verona Ringler’s medical expenses,quality of life

Hello! My name is Ashley, Verona is my newly 3 year old daughter who will also be a make a wish child. . She was born with congenital hypothyroidism which means she doesn’t have a thyroid that functions, she’s been on medication since 3 days old and will need to be for life. She also has autism. But back in September when our whole family got Covid it really hit her hard. Within a few days she started to get very sick and was covered in petechiae, we rushed her to the ER and not long after her labs showed her platelets were at 1 and she had close to no blood in her body. After being in the hospital for a week they did a bone marrow biopsy on her and thought she had ITP. But her body was not responding to any of the infusions she was getting so she needed another bone marrow biopsy to do more extensive testing to try to figure out what exactly was going on with her. Weeks in and out of the hospital with infections, a mediport placement surgery, fevers. Her body has no immune system and a common cold could be deadly to her. Her results came back as her having severe aplastic anemia, Which is a very rare bone marrow failure disorder where all 3 cells ( white, red, and platelets) do not function properly and has hypodysplatic marrow meaning her bone marrow only functions about 20%. The only way to “cure” or treat this is for her to get a bone marrow transplant. She will need chemotherapy before this procedure. I am Verona’s full 10/10 donor match which is extremely rare for a parent to be a full match. About 1% chances. But It was recently discovered that she has short telomeres which are the end caps in DNA. Hers are the length of an 80 year old man’s. We are still waiting for answers is to why this is. It could be genetic and if it is and I have it I will not be able to be her donor. Which beyond devastated us because that is her BEST odds at ever getting better. These results take weeks.. We still don’t have a whole root of answers, for months she’s been going to roswell for blood and platelet transfusions until we get my telomere results to schedule her transplant if I’m able to donate to her. If I am not able to donate to her her odds drop from 90% to less than 40 for her surviving 1 year after the transplant. Her father and myself have not been working during this time because we’ve been caring full time for her and my 14 year old brother we adopted as our son 5 years ago. Verona is my rainbow baby and we tried 2 years for her. All of this right before the holidays has broken both of our family’s hearts. There truly are no words. All we want is our child to get better and to be with her and give her the best life she deserves. Please help us. Prayers ANYTHING is so beyond appreciated. Thank you for reading. Cherish life and health, you don’t think it’ll happen to you until it does.