Here for You, Now and Always

September 23, 2020

Here for You, Now and Always

My daughter, May Robinson, had an accident of Feb 2019 at only 5 months old which left her in the hospital with a severe brain injury suffering a stroke. Once she woke up she suffered 52 seizures before leaving the hospital and suffered almost another 200 more before reaching the age of 18 months. During the first hospital visit (we had a few more emergency room visits because of seizures) we were given a pamphlet about an organization dedicated to helping those with epilepsy .  I faced so many challenges as a new mom with a baby who was having uncontrollable seizures with not many answers to how I can help her, when will they stop, what support can I find locally, who can I talk to? How can I give her the help that she needs?

I searched the internet for weeks about my daughter’s condition and trying to find children like her, trying to guess what challenges we will face down the line, trying to get the best therapy and what I can do daily to better her life and help her blossom. It was devastating when I didn’t find much. It was hard trying to juggle being a new mom, working, therapy schedules and seizures. Once we finally got the seizures under control which was Oct. 2019 and found the right neurologist for our daughter the next step was reaching out to Epilepsy Alliance Florida.  I wanted to be better informed, I didn’t feel like the internet, doctors, social workers were giving me hope, guidance or the support I needed but meeting Mary and joining this organization was the biggest blessing.

Now during COVID-19, Mary, my social case manager at the Epilepsy Alliance Florida helped me fill out paperwork, introduced me to the PPEC program and helped me fill out grants and learn about different opportunities during this horrific time of the pandemic. Myself and my husband lost our jobs and I was 8 months pregnant when everything was shut down in South Florida. Mary called me right away with different opportunities and resources to help my family.

Facing epilepsy alone is scary. Epilepsy Alliance Florida is here to help.



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