Florencia’s Fight Against ELST

Florencia (Flor) is a joyful, kind and compassionate 12 year old girl. She loves camping with her family, Taylor Swift, snuggling with her cat, swimming, playing the guitar, creating art, and hanging out with her friends.

This past spring, Flor’s parents noticed she was not responding when spoken to. Flor was referred to an ENT and received a steroid to reduce inflammation in her inner right ear. At the end of her treatment, there was no improvement. 

To better understand the cause of her hearing loss, Flor had a CT and MRI. A week after her 12th birthday, Flor was diagnosed with an Endolymphatic sac tumor (ELST), a very rare and locally aggressive, skull based tumor. She shares this diagnosis with only a few other children in the world.

Flor spent the majority of her summer traveling to doctor appointments, describing her symptoms to surgeons, answering questions about her hearing loss, undergoing tests and sitting in waiting rooms. She kept a smile on her face through it all and never complained. However, as the days wore on, her smiles began to fade.

Finding a surgical team with the medical disciplines needed to remove her tumor took an incredible toll on Flor. She became increasingly tired and began to suffer from debilitating headaches and tinnitus, leaving her unable to concentrate or fall asleep. She said it sounded like cicadas were buzzing in her ear. The cicada sound she was ‘hearing’ is a by-product of the tumor pressing against her carotid artery.

As summer came to an end, Flor was eager to begin her 7th grade year at St. Ben’s. In late August, Flor returned to school, but it wasn’t for long. As her stamina weakened and her headaches became more frequent and painful, attending a full day of school was no longer an option. 

Flor is now preparing for surgery on October 10, at Lurie Children's Hospital.

It's been a tough year, and it's about to get even harder. The surgery is complicated, and her recovery will be difficult. Following surgery, Flor will receive 24 hour care from a multidisciplinary team of neurosurgical specialists in the ICU.

Flor’s medical costs (the uncovered parts) and her recovery will be a strain on her family. In order to care for Flor, her parents will take a leave of absence from their jobs. If you are able, please consider a donation, which will help her parents focus their energies on Flor’s recovery and rehabilitation.

The GoFundMe site also allows you to send notes of support, and read updates on her status as well, so please return to this site from time to time. Your messages and prayers will be shared with the Diaz family daily. .

With gratitude and appreciation,

Ellen Knight

#teamFlor