Bree is a mentor for parents caring for a child with extremely complex medical needs, rare diseases, seizure disorder, blindness, and mitochondrial disease. She also offers mentorship related to neurology, genetics, gastroenterology, ophthalmology, urology, endocrinology, cardiology, palliative care and physical medicine and rehabilitation care services. She has in-depth experience navigating Medicaid and Health and Welfare programs and traveling for medical care and can offer guidance in obtaining insurance, specialized equipment, and strollers/wheelchairs for hypotonic kids.
My husband Jesse and I are parents to Kyra. Kyra seemed to be a typical child at first, but at around eight or nine months of age, she began to show regression and missed milestones. Her pediatrician was not as concerned we were until she started having seizures called infantile spasms that landed us in the St. Luke’s emergency department. In the ED, she fell into status epilepticus and we lost all signs of our once healthy baby.
I was still breastfeeding Kyra and after the prolonged seizure she was no longer able to nurse or swallow without aspirating. Doctors placed an NG tube, a G-Tube, and an IV port for emergency access (after a few ICU visits). Next, Kyra was put on the ketogenic diet because all seizure medications and steroids had failed to help her. Genetic testing took months, and we later learned that she had a mitochondrial disease with a rare genetic mutation that had never been studied or noted in any other living people. I have since found three kids with her same IARS2 mutation, thanks to Facebook of all places!
My husband is a registered nurse and I am a former hospital educator, so our backgrounds gave us a lot of the tools we needed to care for Kyra. The rest we learned along the way.
Kyra has been in occupational, physical, speech and vision therapies since she was one year old. She currently attends public school in the special needs class and rides the bus with her nurse!
Kyra is legally blind, non-verbal, unable to sit unassisted, and still struggles with respiratory illness and seizures. Kyra is seen by genetics, gastroenterology, ophthalmology, urology, endocrinology, cardiology, palliative care, and physical medicine and rehabilitation specialists at St. Luke’s Children's. She also sees a neurologist/mitochondrial specialist and pulmonologist at Seattle Children’s Hospital.
If you would have told me a few years ago that I would be catheterizing my daughter every three hours, I would have lost my mind! Now, the things that once seemed daunting have become easier and more manageable with just a little practice. I remember feeling so isolated when this was all first happening. Once I found others going through similar journeys, my world felt a little less small.
Caring for a child with complex medical needs can be complicated and overwhelming. Support from someone navigating similar challenges can make all the difference.