Story told by Jenny Shapiro- Mother of Alexis
When Alexis was diagnosed with a brain tumor, I had never imagined what this would mean for our family long-term. The type of brain tumor she had is called Craniopharyngioma; which is a rare tumor found near the pituitary gland.
Although the surgery to remove the tumor a few years ago was a success; it in turn damaged Alexis’s hypothalamus and pituitary gland, which are two organs that help regulate energy balance, appetite, and weight. My daughter’s adrenal insufficiency leaves her vulnerable to potentially lethal blackouts.
As we were leaving the hospital after her surgery, the doctor explained to us the extreme importance of carrying an emergency needle and vial of a special steroid called Solu- Cortef, which must be injected within minutes after feeling any symptoms. Without this hormone in her body; my daughter could easily become unresponsive very quickly, or even comatose.
This was profoundly frightening to me as a mother. I reached the point of not wanting to let her out of my sight; including no longer wanting her to go to school. I soon had to realize that she deserved to be as independent as possible, regardless of her condition.
As I navigated my way through the days and weeks of taking care of my medically fragile child; one thing was immediately clear… I knew I had to get Alexis a MedicAlert bracelet right away. If she were to become sick with the flu, get a fever, break a bone, or was in a car accident; her brain wouldn’t be able to tell her body that she needs cortisol- which is the adrenal hormone that helps your body fight stress.
As soon as we ordered her first bracelet and put it on her, I can honestly say I felt a sense of relief. I knew that if anything were to happen when I am not around; Alexis’s medical information would be made available immediately to those needing to help her. Her MedicAlert bracelet reads: “ADRENAL INSUFFICIENCY. NEEDS STRESS DOSE SOLU-CORTEFF.”
Knowing she is a member gives me peace of mind and has been a huge relief. I update her medical information often online, and she wears her MedicAlert bracelet every day. Alexis loves the different styles and has done really great wearing them.
“If not for MedicAlert, I would be absolutely afraid to let Alexis do any normal things a 12- year old should be able to do. I am so thankful that I found such a great organization to trust my daughter’s life with.”