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Liyana Sophia Hunter
Jun 9, 2017 Latest post:
Jul 3, 2017
Liyana started out life pretty "normal" but at 6 months old there was a change in her. We had no idea what it was so we took some video and went to the Pediatrician..which led to the local Neurologist..which led to seek a specialized team of Doctors at Boston Childrens Hospital. Liyana was 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! She did develop ADHD which is typical in Epilepsy kiddos but was something we could easily treat through medication and therapies. Liyana was seizure-free and we thought she was finally in the clear since we had not seen one seizure since she was 4. But on a walk to the Elementary school carnival in April 2016 she suffered a massive seizure and stopped breathing, taken by ambulance to Childrens Medical Center Dallas. We were met there 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 our fears that Liyana had a new onset of seizures. We knew after a few days of her being treated there this was not going to be the ideal place we wanted Liyana treated. 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 her team had 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 in early June and Liyana will be undergoing 2 brain surgeries. #liyanastrong