Liyana's Story

A little background on Liyana...she was diagnosed with Epilepsy - which caused frequent seizures at 6 months old. Unfortunately her seizures did not respond to multiple medications and she started to digress, losing many of her baby milestones and stopped developing new ones. Our family ended up seeking treatment with a medication that at the time was not approved in the U.S., and a neighboring hospital in Canada worked with our hospital to trial the medication. God answered our prayers, and at the age of 3 she was seizure-free, and with intense therapy intervention by the time she was ready for Kindergarten and was on par with her peers! We were overjoyed and lived this reality for quite a few years.

One evening while walking to a school carnival, Liyana stopped in her tracks, her body went limp, her eyes rolled back, her breathing stopped and rushed by ambulance to the hospital. We knew at that moment her seizure freedom had ended and within a few days we were flying to seek treatment at Boston Children's Hospital, where she was treated many years earlier. Since that time Liyana has undergone countless tests and scans, hospital stays and multiple medication trials. She has undergone SIX brain surgeries which left her not only without seizure freedom but also now has deficits that required months of rehabilitation and some that sadly are permanent.

With all the above being said, Liyana doesn't let that get her down and her positive attitude amazes everyone around her! Along with focusing on her own foundation, Liyana volunteers as a Make-A-Wish Ambassador. She also both participates and raises money for Hopekids, a local non-profit that provides fun events for medically challenged kiddos like her. Liyana is also very involved in raising awareness for Epilepsy through educating the community about seizures and how they can help. She speaks at local schools and raises funds through the Epilepsy Foundation to find a cure! Liyana still travels for medical treatment quite often and knows first hand the power of what her foundation does for these amazing young warriors!

#liyanastrong