Swan Keyes

Support Lalibela’s Recovery from Lyme Meningitis $3,300 to raise Dear friends and family, Several of you have expressed care and asked how you can help. THANK YOU! The care itself makes a great difference. If you would like to and are able, it would be very helpful to have some support with the expenses of being in the hospital all week. Fortunately, health insurance will cover most of the hospital bill, which is already over $63,000! But other expenses include travel back and forth, meals and other supplies, and--most importantly--alternative health care to rebuild her immune system once we get home. Here’s the situation so far, as of July 22: Day 6 in the hospital with Lalibela (our youngest daughter): After two weeks of nonstop migraine and a sore neck, I picked her up from camp and took her to the ER in Valhalla, NY, where she has undergone nearly every test imaginable—Spinal Tap, MRI, CT scan, blood tests, and ophthalmology exams. The diagnosis is Lyme meningitis and IIH, with fluid buildup and swelling around her brain. They drained some spinal fluid, which brought a little relief from the pressure but also new pain. Lalibela has been a champion through it all, but it’s quite a process. Now she is on heavy-duty IV antibiotics, hoping the symptoms subside so she can get out of here soon. The plethora of tick-borne illnesses out there is no joke, and we’ve learned that most tick bites go unnoticed. If you suspect a tick bite, take action early—advocate for your care and don’t wait for blood tests that can give false negatives in the early stages. Especially if there are intense headaches with neck stiffness that won't go away--these are symptoms of Lyme Meningitis, which can devastate the nervous system. When the ER initially tried to send us home, I pulled the doctor aside and told her we had already lost one child and wouldn’t be risking another, so I insisted on a spinal tap, and quickly found out that Lalibela’s eyesight and brain were in very real danger. Fortunately, we caught the infection and are praying for her full recovery. We are grateful for caring family members and the wonderful staff at Maria Fareri Children’s Hospital, including a sweet canine companion who has made a difficult time a little easier. Thank you deeply for your love and care, and for being with us on this journey. Update: Lalibela is home! She has 3 more weeks of potent antibiotics and many follow-up appointments with infectious disease specialists and neurologists, and then we can begin alternative treatment to ensure that her central nervous system has no lasting impacts. It looks like we caught this in time, and despite the continued pain and nausea, she is upbeat. In appreciation, Swan