Rare Denys Drash Diagnosis for baby Carmen

On June 2nd 2023 I gave birth to my second child. I had a healthy pregnancy and nothing was "off" in anyway, however, after being whisked to a hospital two hours away a few hours after birth and a 13 day hospital stay, it was determined that Carmen had a mutation on her WT1 gene and had Denys Drash Syndrome. It is a rare syndrome affecting her kidneys and puts her at a very high risk for developing either a cancer called Wilms Tumor, or her kidneys failing in the next few years. She has to have multiple specialty visits every couple of months two hours away. She also has excruciating eczema that she is on an expensive medication for.

My family is on a singular salary at the moment. I do have a part time job myself but is usually 5-11 hours a week. We are to the point where we have to leave groceries behind at the store because we cannot afford them all. Florida says we do not qualify for food stamps because they do not take into account that my husband is supporting a family of 4 on 38,000. He pays all the bills, including our mortgage which has gone up by 400 dollars. We are struggling. I was told to apply for SSI for Carmen a month after she was born and I was told the case would take 6 months to reach a decision. I called them in March after not hearing from them since last year in July and was told there are so many cases for review they won't even LOOK at her case until next month, and that doesn't even count the lengthy review afterwards, even though she she should be awarded since she has a renal disease. My family appreciates any and everything that you can help with. Thank you from the bottom of our hearts.