Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Emmy was born with a rare, benign tumor called a hypothalamic hamartoma brain tumor. It is a symptom of a syndrome she has called Pallister-Hall Syndrome. For most of her life, the tumor has remained stable and caused few complications. In August of 2018, Emmy had her annual well-check appointment. At that visit she received 3 vaccinations: DTap, meningitis, and her 1st dose of the HPV vaccine. The following day, out of the blue, Emmy began having seizures. Initially, the seizures were difficult to diagnose because, as we would later learn, they occur so deep in her brain. They do not register on a typical EEG. Nor do they respond to any type of anti-seizure medication. At first doctors thought they might be anxiety attacks, but Emmy always knew in her gut these were something more. The seizures continued to intensify and it became more and more difficult to get her in to see a specialist in a timely manner. On a leap of faith, I decided to reach out to a doctor I had only read about who specialized in Emmy’s type of tumor. Years prior, Shawn had set up a notification system on his phone that would alert him whenever stories about hypothalamic hamartomas or Pallister-Hall Syndrome were in the news. Therefore, we had read about Dr. Daniel Curry from Texas Children’s Hospital in Houston, performing the first laser ablation brain surgery in the U.S., but never dreamed in a million years we would eventually need that information. I had also visited the website “Hope for HH,” and read stories about children who have the same type of tumor as Emmy who Dr. Curry has helped with this revolutionary non-invasive surgery. Of course, naively I didn’t think Emmy needed this surgery. However, I thought maybe Dr. Curry might have seen patients with similar symptoms and be able to point us in the right direction of an accurate diagnosis and treatment plan. I was completely unprepared when I was told based on her medical records, tests and images, information and videos of the seizures I had provided, that Emmy was a candidate for laser ablation surgery. It has been a long 5 months since Emmy’s first seizure. Unfortunately, you might even say we’ve gotten used to them. But finally, the next step in this journey is about to begin. Emmy & I are heading to Houston on Jan. 21st. She checks into Texas Children’s on the 24th for her first of a week’s worth of tests, appointments and imaging. Following that, we will meet with her doctors; and provided the results show what they anticipate, laser ablation surgery is scheduled for Friday, February 1st. Our family cannot begin to thank everyone enough for all the love and support you have shown us and Emmy from the very onset. We are unbelievably lucky to have such an amazing support system and Emmy is so fortunate to have you all in her corner, cheering her on and praying for her. Please continue to keep her in your prayers and pray that this journey ends with Emmy being healthy and seizure-free.