Hi Friends, Only a few of you are aware of our youngest daughter Willow's current medical emergency. For those that have never met Willow, she is a happy, funny, and witty little girl who loves to read, draw, and sing Disney musicals like Encanto, Frozen, and The Greatest Showman. Starting in October of 2024, she started presenting with random and infrequent head tics. By January they were happening every few minutes and we reached out to Vanderbilt Pediatric Neurology who had Willow evaluated. After a spinal tap and MRI, they found elevated antibody titers to Group A Strep and initially diagnosed with Syndehamns' Chorea due to the presence of auto-antibodies attacking her brain. We were assured that this was a self-resolving condition. However, as time went on, Willow continued to decline and started having symptoms of psychosis. She has since had IVIG and a course of oral steroids to try and calm her immune system. Unfortunately, things have never been worse and she is all but a shell of the little girl she once was and almost completely uncommunicative with nearly constant vocal and head tics accompanied with psychosis. Vanderbilt is not managing Willlow's case as they should and we are left with no choice but to travel to Boston where one of the few experts in PANDAS has a specific clinic. This is the first of 2 trips we will make with the other being at Boston Children's Hospital. We hope that the medical experts at these institutions can outline a clear and effective treatment plan for Willow so that we can get our precious girl back from this hell. This has taken a toll on our entire family with round-the-clock care and just devastating to watch her go through this unable to help her. Although it is humbling to even have such a fundraiser, I know we have friends and family that would love to help offset some of these travel expenses as we are already overwhelmed with the medical bills associated with the treatments she has already received. Our first trip to Boston is this Monday July 24th and the second is likely in August. Thank you for considering and I will provide updates as we learn more.
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