My name is Katrina Ventola. I am the mother of Jacob, age 11. In July of 2019 my son was diagnosed with a brain tumor (Craniopharyngioma). As you can imagine this devastating news came as a shock to all of us. Jacob had to have emergency brain surgery and spent his 11th birthday in the hospital. Right after that my son began radiation therapy and then, as a result, was diagnosed with adrenal insufficiency.

Adrenal insufficiency, including Addison’s disease, is a disorder that occurs when the adrenal glands don’t make enough of certain hormones. These include cortisol, sometimes called the “stress hormone,” which is essential for life.

Jacob has to take hydrocortisone pills everyday three times a day to make up for the fact that he no longer creates cortisol in his brain. In case of physical distress or intense emotional trauma, my son would have to be “stress dosed” via pill or injection. The hydrocortisone as well as the emergency injection, SoluCortef must be kept near him at all times. 

Currently, in the state of Florida a school nurse is the only person that can keep these medications. If the school were to go on lockdown for any reason at all my son would not be able to access the school nurse. If he needed his medications in such an emergency situation and was unable to get them, his doctors have informed me that my son would die.

I have found out from other moms facing similar challenges that recently the States of New Jersey, Tennessee, Oregon and Virginia passed a Bill allowing students with adrenal insufficiency to keep these injectables and pills on them at all times to prevent death.

Here is the bill that was passed in New Jersey:

https://www.billtrack50.com/BillDetail/997279

I would like to request that Senator Powell please work with me to pass a similar bill in Florida. As a mother I will work tirelessly to make this happen with Senator Powell‘s help.