Helping us get Aaliyah through her battle

Hello all! My names Tara and I’m Aaliyahs mom. First I’d like to give some background on what our family has been going through: My poor baby has been on such a terrible roller coaster ride. Starting from late November until now, Aaliyah began showing signs of anxiety/panic disorder and depression in December, which then manifested into more mental issues. She did therapy and psychiatry in hopes it would help, well she kept decling through January. January 27th is when she went into a full psychosis and also become catatonic. She was admitted into Rainbows CAPU where they tried to treat her with anti-psychotics and Ativan for the Catatonia. She was thought to have Schizophreniform. She stayed there for 2 weeks and they released her because she was showing small improvements and they said it could take months to get her back to baseline. We were home for less then 2 weeks and Aaliyahs health began declining and Catatonia seemed to be getting worse. She could barely see, walk, talk, fevers, and headache. I knew something wasn’t right so brought her back to rainbows children hospital where they admitted her immediately. It took about 5 days of blood tests, ekgs, mri’s, cat scans, and any other test u could think of for them to finally figure out what was wrong with her because they were at a loss. They then diagnosed her with lupus of the brain neuropsychiatric SLE which is quite severe for her. Unfortunately lupus is a great immitator and can act as other diseases or illness Which it has done with Aaliyah and she was misdiagnosed for quite some time. The Lupus has attacked her brain and eyes the worst. Small parts of it are seen in her lungs and kidneys but nothing major right now. So the next steps are for them to give her some infusions, and more aggressive medicine to try and get the lupus under control. Her blood will need to be filtered, she’s on steroids, she will undergo a small procedure, all in hopes that they can get this under control. Aaliyah’s very catatonic still, she’s pretty much full care and she has began losing some hair not noticeable thankfully. Aaliyah will have lupus forever but it is treatable. She will lose the chance to have children due to the medicine but we will have them freeze some eggs now in case she does want kids. She will be in the hospital for while until they can get in under control but she is a fighter and she’s young and I know that she can pull through this! For me as her mom this has been devastating to watch my daughter suffer so much. It’s like her body but the sassy, loving, Aaliyah I once knew is lost inside her own body somewhere. I wouldn’t wish this on anyone. I decided to make this account because I am a single mom and the sole care taker of my entire family, I have had to take a leave from work to be here to care for Aaliyah and am unsure of when I will be able to return to work. Aaliyah needs me more then ever right now. I have exhausted all sick and vacay pay. I’m trying to get assistance from government programs but that’s a process. I have 2 other daughters at home and I have been trying so hard to keep everything as stable as possible but unfortunately there’s only so much I can do on my own. I never planned to be out for so much time. If there is anything you can help with in this devastating time I would greatly appreciate it, even if it’s just sharing this or passing the word on. Thank you all so much, and continue to pray for my baby! Lupus sucks!!! ❤️