Hello, my name is Jaclynn. Never in a million years did I ever think I would be asking for help like this. My daughter Stella was diagnosed with Rett Syndrome on 12/5/25, a devastating neurological disorder. We have known that Stella had a gross motor delay since she was about 10 months old. At that time, we started physical and occupational therapy. Over the last year, she has lost most of her speech except for a few words. Her hand use has also been mostly replaced with non-purposeful repetitive hand movements, and she is mostly unable to feed herself and play as she once did. Throughout December, she was having difficulty with swallowing, gagging, and vomiting. On 12/30/25, I felt she was becoming dehydrated and brought her to the University of Iowa Children’s Hospital. Since being here, she has gone through more than most. Through a swallow study, it was confirmed that she was aspirating while eating, and a feeding tube was placed on 1/5/26. She will require tube feeding for the rest of her life at some level, although we are hopeful she will be able to safely eat by mouth in the future. On 1/6, she spiked a fever and was diagnosed with Influenza A. Being ill made it nearly impossible for her to tolerate her tube feedings. She then had a PICC line placed to ensure she was getting her nutrition in an IV form. Over the last couple of weeks, we have been slowly reintroducing her tube feedings at different schedules as she tolerates them. This has been the hardest time of our lives, and nothing prepares you to see your child in this condition. We are planning on discharging home today but know that the coming months will be a challenge as we adjust to our new normal. I have been able to work very limited hours since she became hospitalized. Stella can no longer attend daycare as her needs are too high. I will become her main caretaker but hope to be able to have her grandmother become comfortable enough to watch her at some point so I can return to working full-time. Any help in any form is very much appreciated as we continue to navigate this road. Thank you from the bottom of our hearts for anything you are able to share.