Rainee’s Fight: Brain Surgery & Healing Journey
Hi, my name is Lisa, and I’m Rainee’s mother. I’m reaching out to ask for support in Rainee’s healing journey.
On June 6th, 2025, my 19-month-old daughter Rainee underwent an emergency craniotomy after a large mass was found on her brain during a CT scan. An MRI confirmed our worst fear: it was a brain tumor. We are now anxiously awaiting pathology to determine whether it is a low-grade or high-grade tumor. No matter what the result, Rainee has a long road ahead — and she needs your prayers, love, and support more than ever.
Rainee is the light of our family. She has a big brother, Cameron, and two adoring sisters, Carina and Skyler. Her journey has never been easy — this was her third brain surgery. She was born with hydrocephalus and later diagnosed with a variant of an ultra-rare genetic disorder gene SETD2 (variant c.2824G>A and p.Gly942Arg), so rare that there are no published medical studies to guide her treatment. Because of this, her doctors are also performing a genetic study on her tumor to help us learn more and guide her care.
She is fed primarily through a G-tube and has 7-8 daily seizures. In just the last year, she’s had three major surgeries before this one: an ETV procedure (Dec 13, 2023), a VP shunt placement (Dec 30, 2023), and bilateral eye muscle surgery (April 18, 2025). We’ve now spent over nine days in the PICU at Rady Children’s Hospital and just moved to the recovery floor. We expect to remain hospitalized for at least four more days while her neurosurgery team develops a long-term plan — possibly including radiation or chemotherapy.
As her mother and sole caregiver, I cannot leave her side. I am unable to work during this time, and the financial burdens of this crisis — hospital stays, parking, food, lost income, and daily needs for my other children — have become overwhelming. I receive no outside help, and it is critical that I stay by her side without the added weight of financial fear.
If you are able, please consider donating or sharing this page. Every donation, no matter the size, goes directly to supporting Rainee’s care and recovery. Most importantly, we ask for your prayers. Please join us in asking God to bless Rainee with strength, healing, and continued miracles.
From the bottom of my heart — thank you to my family and friends for your compassion and support. God bless you!!
