LIYANA HUNTER #liyanastrong profile picture

LIYANA HUNTER #liyanastrong

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Liyana's Story


Liyana started out life pretty "normal" but at 6 months old we noticed there was a change in her.  We had no idea what it was so they took some video and went to the Pediatrician.  This ended up leading us to the local Neurologist, which led to seek a specialized team of Doctors at Boston Children's Hospital.  Liyana was then diagnosed with a rare seizure called Infantile Spasms and also with a diagnosis of Epilepsy.  Liyana lost all her infancy milestones and stopped developing new ones.  She spent the first several years of her life at BCH with a team of amazing people trying to give Liyana the best care with the best outcome.  
After many years of treatments, clinical trials, testing and hospital stays we finally found effective treatment to control her seizures and at the age of 4 Liyana was seizure free for the first time since infancy!
Liyana was seizure-free from the time she was 4 years old until April 2016, when we were walking to the Elementary school carnival and she suffered a massive seizure and stopped breathing.  She was taken by ambulance to Children's Medical Center Dallas.  We were met by her Neurologist that manages her ADHD, but has never had to manage her Epilepsy.  After a series of testing and monitoring he would confirm that Liyana had a new onset of seizures.  We knew after a few days of her being treated at the local hospital that this was not going to be the ideal hospital for Liyana's treatment.  We wanted her to get the best care possible and so we contacted someone from BCH and told them the situation and asked if they would take her case on and within a few days we flew from Texas to Boston to start her again on the same journey she started almost a decade earlier.
Since April 2016 we have made trips back and forth frequently to Boston to undergo various tests, see her core team of Doctors, trying countless medications, undergoing studies, clinical trials, etc.  In the summer of 2016 it was beginning to be clear that Liyana's seizures were resisting medication and we began to explore other options.  She began the surgical evaluations and testing towards the end of the summer and at the beginning of this year based on all the data collected, her team found a lesion deep in her brain which they believed was the source of her seizures.  Her Epilepsy team along with the Neurology and Neurosurgery teams started developing a roadmap to get everything they needed to plan out Liyana's surgery.  In early April we were back in Boston meeting with all the teams to get all the details and set a surgery date.  We left Texas for Boston on June 1st to proceed with Liyana's two brain surgeries.  
On June 6, 2017 Liyana underwent her first of two brain surgeries. She had a few post surgical complications, but remained her sweet, strong, determined self.  She fought through each and everyone that arose and did it with such courage.  The team had gathered enough information in the week that followed her first surgery and was ready to do perform the second surgery, exactly one week later. On June 13, 2017 Liyana underwent her second brain surgery to remove a lesion that was found on her right temporal lobe and was in the ICU for quite some time due to post-surgical complications.  After months of rehabilitation and therapy Liyana is now on her road to recovery but unfortunately we are still battling seizure control and the fight for a Cure.  Liyana will undergo another sets of brain surgeries in the hope of controlling or eliminating her seizures.  

I am raising funds to make a difference in the lives of people living with epilepsy. The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.
Please support this cause by making a safe and secure donation to my fundraising webpage.  I will send you an awesome #liyanastrong wristband so you can wear it proudly that you are supporting the fight against Epilepsy along with me too!  Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the nearly 3 million people in the U.S. who are living with epilepsy and seizures. 

 Thank you for your help and support