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Key Club sells bracelets for #LiyanaStrong

The+hashtag+%23LiyanaStrong+was+used+on+social+media+during+her+surgeries+so+everyone+was+informed+of+how+she+was+doing.
The hashtag #LiyanaStrong was used on social media during her surgeries so everyone was informed of how she was doing.

The hashtag #LiyanaStrong was used on social media during her surgeries so everyone was informed of how she was doing.

provided by Jennifer Hunter

provided by Jennifer Hunter

The hashtag #LiyanaStrong was used on social media during her surgeries so everyone was informed of how she was doing.

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Key Club is planning an upcoming service project and volunteer event to sell bracelets for $5, with the proceeds benefiting Vandeventer School student Liyana Hunter as she continues through her medical journey that has consisted of multiple brain surgeries.

Hunter, who was diagnosed with infantile spasms when six months old, suffers from epilepsy, a central nervous system disorder in which the brain activity becomes abnormal, and the fundraiser hopes to be able to help and support her family reach a goal of $30,00 goal on Hunter’s YouCaring page, created by fundraiser organizer Sonya Kelly.

Working with a specialized team of doctors back in Boston where the family is originally from, the Hunter family found effective treatment at Boston Children’s Hospital to control Liyana’s seizures and at the age of three, she was seizure-free for the first time since infancy.

provided by Jennifer Hunter
Liyana’s favorite Child Life coordinator at Boston Children’s Hospital with all the toys that were donated during Liyana’s Toy Drive over the winter break.

“Liyana started out life pretty ‘normal’ but at 6 months old we noticed there was a change in her,” mom Jennifer Hunter said via email. “We had no idea what it was so we 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 disorder called infantile spasms and also with a diagnosis of epilepsy.”

Knowing what was wrong with Liyana didn’t make things any easier as her battle was in its early stages.

“Liyana lost all her infancy milestones and stopped developing new ones,” Jennifer said via email. “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 a few years of treatments, clinical trials, testing and hospital stays they finally found effective treatment to control her seizures and at the age of three Liyana was seizure free for the first time since infancy!”

However in April 2016, while on the way to the elementary school carnival, she suffered a massive seizure and stopped breathing. She was taken by ambulance to the Children’s Medical Center Dallas and flew from Texas to Boston to the Boston Children’s Hospital.

Since then, she has made frequent trips back and forth to Boston as her epilepsy, neurology, and neurosurgery teams began planning out her surgeries when it became clear her seizures were resisting medication.

“We 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,” Jennifer said via email. “In the summer of 2016 it was beginning to be clear that Liyana’s seizures were resisting medication and they 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.”

provided by Jennifer Hunter
Liyana bonded with her nurse, Morgan, after her second surgery and over the winter break got her wish of having her as a nurse when she was admitted over winter break.

But this wouldn’t be the end of Liyana’s journey as she spent her winter break undergoing further testing at Boston Children’s Hospital.

“She had a few post- surgical complications, but remained her sweet, strong, determined self,” Jennifer said via email. “Unfortunately soon after we came home we started to notice seizure activity and was admitted to the local hospital here which confirmed Liyana is still having seizures and that the surgery was likely unsuccessful.”

To finance the surgeries and Liyana’s treatment, Vandeventer and Liberty students are doing what they can to support the Hunter family.

“Your thoughts and prayers are lifting Liyana up so please keep sending them,” fundraiser organizer Sonya Kelly said. “As you can imagine, the family is going to be having a lot of medical bills. We would love to try and help them out and raise money for some of the medical expenses.”

That’s what motivated Liberty’s Key Club to relaunch the fundraising efforts to help the Hunter family as well as raising awareness for epilepsy.

“It’s a really unique way to help out and I’m glad to see students trying to help one another,” Key Club sponsor Kristin Cubic said. “If it takes of and they’re able to get it of the ground, then it can bring people together.”

But while fellow students try to help Liyana, she has been doing what she can to help others.

provided by Jennifer Hunter
Liyana is passionate about performing at dance competitions, something she tries to excel at despite her condition.

“Liyana is the most positive, strong willed, and amazing young lady,” Jennifer said via email. “Instead of being sad or upset she has this condition she has turned it into a positive and has joined the Epilepsy Foundation Kids Crew with a mission of spreading education and awareness to her school and helping kiddos around the country with loving support  who are new to this condition. During National Epilepsy Month in November she raised money for Epilepsy Research.  Liyana also created a toy drive for the playroom at BCH and with help from family, friends and neighbors she has collected over 500 toys for the 9NW Playroom.  Most of these kiddos are confined to their rooms and having new toys and games or an art project brought to their room brightens their day.”

Despite her medical adversities, her mom believes Liyana turns everything into a source of optimism.

“Liyana lives by this motto which may be useful to sum up Liyana’s journey,” Jennifer said via email. “My issues I have today will turn into my strength and courage I need tomorrow.  Pretty much sums up how Liyana views her life, that her most tough days help her become a stronger kiddo and helps her not to give up or lose hope.”

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Key Club sells bracelets for #LiyanaStrong