Willow Rose made a very exciting entrance into the world 3 weeks before her due date. We had complications and a 9-day NICU stay. We got cleared by cardiology at 6 months but she had a severe head growth spurt at the same time that prompted imaging and more testing. While we kept searching for answers, at 12 months of age Willow joined an Early Intervention program to help with her developmental delays. She began physical therapy, occupational therapy, speech therapy, and physical therapy. She worked incredibly hard for every milestone she reached. She did things in her own way and in her own time. I have always said she's on her own schedule. She's a unicorn after all.
There were more genetic tests, there was another MRI, another MRV, a new MRA. There were blood draws and tissue samples taken. Willow powered through every appointment like a champion. There were extra pediatrician visits due to her unique situation that no one could explain. We waited, we worried, we searched (and searched and searched) for answers. We were accepted into the Undiagnosed Disease Network, a large study group for rare diseases. Then we finally got the results from our Whole Exome Sequencing test and we received a diagnosis that released us from that program. When she was 3, we finally got the answer: FOXP1 syndrome with a de novo mutation, and she was the first FOXP1 patient in our state.
We have continued therapies. We have continued advocating. We have continued seeing several specialists: neurology, ophthalmology, OT, ST, urology, psychology. We have graduated from others. Even this is not a complete retelling of her medical history. This is simply a summary of what we have gone through so far. She has seen more specialists than any person should ever have to see. She has spent an unfair amount of time inside doctor's offices. She’s a warrior princess and has been from the start. She’s our unicorn, and she’s a FOX.