Lilli's Hydrocephalus Fund

Hi. I know I haven’t met many of you. My name is Lilli Roelofs, and I am the daughter of Brent. Lilli means flowers in Estonia, where I was born, because the photo dad got of me before he met me was me in a bed of petunias. Dad annoyingly calls me Lillibet. I guess I have dual citizenship, which I hear is a big deal, although I haven’t traveled to the U.S. to meet my family there yet. I am 1.5 years old.

I have a great life with my dad. I love rabbit ears filled with duck. Dad also gives me treats in a toy that’s a puzzle. It drives me crazy, but I will try for hours. And I really love the small spoonfuls of vanilla ice cream my dad gives. Don’t say ice cream out loud to me. I love to play and cuddle and walk. And I love to spin. Anytime I’m excited, I have to spin. Anyone who meets me falls immediately in love with me.

I started having neurological issues. It hurts when dad picks me up and I freak out when he touches me now. I started having seizures. I still try to play with Dad but have to stop because it hurts, or I have a seizure, or I fall. Dad took me to the emergency room. I saw a neurologist and had to have an MRI.

I was diagnosed with severe encephalitis. My brain is in my cervical spine. So it's been pushed into my neck. I have had a little improvement with the medications. But now I am having a hard time peeing in the house even when I just went out. Dad is in the U.S. now visiting family and will have multiple visits at Mayo Clinic because he hasn't been feeling well for quite a while now. Any help you can give would be awesome. Dad is not the type of person to ask for help, but expenses continue. The surgeon had to cancel our appointment before dad left because he had COVID, so we will not see him until Dad gets home next month.