Eleanor the Epilepsy Hero!

Our healthy, happy 9 month old baby went from eating pizza & giggling to having our lives forever changed with an epilepsy diagnosis, spending her first Halloween and Thanksgiving hospitalized. Money raised here will strictly be used for direct medical expenses for Eleanor. Her 1st bday is January 21st, we ask for donations to help offset her medical bills in lieu of gifts!

My mother and I were on the way to Nashville for a work conference on Oct 23rd. While driving through ATL, my mom realized something was wrong with Elee so I pulled to the shoulder. My mom had Elee in her arms limp and not responding. The ambulance gave Elee emergency medication and took us to the nearest ER where we were transferred in a critical care ambulance to CHOA-Egleston. We now know that was her first set of cluster seizures and this was the beginning of her Epilepsy journey.

Elee continued to have seizures everyday, many requiring rescue medications and Oxygen. We were hospitalized in ATL at CHOA from Oct 23rd to Nov 10th.

After Elee spent her first Halloween in the hospital, and 16 days later with no end in sight, Erick and I decided we were going to continue treatment at MUSC. We arranged for her to be transferred closer to home to MUSC Shawn Jenkins Hospital via critical care ground transport on the 10th. She went the whole 6 hour drive without seizures and within an hour of arriving, she started having seizure clusters again.

Elee was inpatient at MUSC until Nov 30th, totaling 39 consecutive inpatient days.

During this time, she had an MRI, CT scan, X-ray, swallow study, dozens of EEGs, several PICU stays, countless blood work, genetic screening, and several failed medication regimens (including a medication that costs $100k!) , along with dozens of neurologist and specialist examining her to try and figure out why her seizures were unable to be managed with medication. So far our bills total over 1 million dollars but we hope Erick’s insurance covers the bulk of that bill.

At MUSC, she was able to start a medical Keto diet for Epilepsy and so far the diet, in conjunction with 3 anti seizure meds, and LOTS of prayers, is keeping our baby seizure free at home!

Since we don’t have all of her genetic screening back, we don’t know what is causing her seizures or much about the prognosis.

We are home now and adjusting to our new routine of checking ketones, blood sugar, and following a STRICT medical Keto diet along with her stringent medication schedule. She has to have weight checks at the pediatrician weekly and therapy 3 times a week to help her catch back up from some of the regression she has experienced. She has a follow up at MUSC with neurology , genetics, and the dietician in January.

With all of these new responsibilities, I had to quit my job to stay home and take care of Elee while we navigate these new changes. We are taking a leap of Faith that God will help us figure everything out.

We are setting this account up to pay for Elee’s medical bills and DIRECT care expenses such as her prescription Keto Formula that is not covered by insurance and costs us $120 a month, her rented DME equipment, lancets etc. We will not use any of this money for ancillary costs like gas or travel etc.

We are so blessed to have supportive friends and family (and even strangers we have never met). God has been so good to us and we have Faith and Trust that he has a plan for Elee that’s bigger than we can imagine!

God Bless,

Hilary and Erick Bassett