This Support Registry is built to offer direction to everyone who kindly wants to help our family. Brian, Katie, and Leo will be in LA for a month for Leo's imaging, surgery, and rehab. We'll split our time between a hotel and UCLA, as there's only one sleeping chair in the hospital room.
During this time, Aviva and Maya will be in their grandparents' care back home in Nashville. While we've talked with them a lot about what this will look like, being away from their parents and brother will be incredibly difficult on our sensitive 6- and 4-year-olds.
Whether you're willing to give money to cover this trip, send meal vouchers, or lend a hand, your support makes a real difference.
Thank you so much.
Some background about our boy:
Last summer, an ER visit for seizures turned into a one-week Vanderbilt stay for 6-month-old Leo. Now almost 16 months old, Leo will have a radical brain surgery called a hemispherectomy to disconnect his left hemisphere. Stopping seizures is a necessity for his development. It'll mean right-sided hemiparesis, the loss of his right field of vision, and lots of other difficulties, but it'll also save his life.
Leo has a brain malformation called hemimegalencephaly; that's his diagnosis. But he's also a big hugger, a huge smiler, mischievous, a lasagna fan, entranced by our dog, and enthralled by his sisters.
These past nine months have included so much crying, grief counseling, administering three medications every 12 hours each, EEGs, frantic videos sent to our neurology team, taking leaves of absence from our jobs, applying for grants, advocating with Tennessee lawmakers to approve out-of-state second opinions, weekly PT/OT therapy appointments, a failed February trip to LA for surgery (his chest congestion prevented general anesthesia from being safe), and so much more.
We're only able to make this trip because of friends, family, and doctors who've taken care of our other kids, cared for Leo while we tackled paperwork, held our pain during late-night Zoom calls, offered their airline miles, filed our taxes, cleaned our house, researched orthotics, pushed for no-cost therapies through the Tennessee Early Intervention System, watched Ted Talks to inform themselves, cooked for us, and altogether put their lives on hold while we scrambled to hold Leo's life together.
We are so grateful for them, and for our Leo.
Words of Support
Donate, send meals, or lend a hand to include words of support.
Abigail.lewis614
Kimandterry7.7.18
Ktillman
Blg722
Anonymous
Christi Anglea