Local store helps girl raise donations for research for rare type of epilepsy

EL PASO, Texas (KTSM) – In Bloom is selling Lennox-Gastaut Syndrome Awareness Ribbon Bath Bombs to raise funds on behalf of Lily Cadena who suffers from this disease.

Lily Cadena, 16, was diagnosed with LGS when she was just four years old. Her mother Tifni explains that the disease is a rare type of epilepsy that causes different types of seizures that occur on a daily basis.

“The triggers are unique for each person. For her, it is the low pressure system, when she is too tired or too stimulated, ”explained Cadena, Lily’s mother.

She said Lily needs to take a cocktail of drugs that help her control the seizures, but there is still no cure for the disease.

Lily’s fits sometimes cause her body to suddenly freeze and fall to the ground, often causing injury, even with constant supervision.

“It keeps her from doing things that she really loves and that’s the really sad part,” said Cadena, explaining how Lily enjoys going to baseball games but is often unable to do so due to her seizures. .

Cadena says her other favorite activities are singing and dancing, which requires the whole family to be on their feet.

“We have to watch her like a hawk as she sings and dances so that she doesn’t fall down and have a seizure, so it’s a family affair,” she said.

Cynthia Chavira is Cadena’s neighbor and the owner of a local In Bloom store.

She came with Lily’s mother and created LGS Awareness Ribbon Bath Bombs to raise funds on Lily’s behalf.

“I wanted to raise awareness of Lily’s situation and I know her parents go through a lot on a daily basis, and seeing them go through something so difficult puts into perspective the things we don’t realize that are so easy for us on a daily basis. “said Chavira. .

Proceeds from the bath bombs will be donated to the LGS Foundation, which Cadena says helps fund research into the disease.

Before Lily was diagnosed, Cadena and her husband saw many different doctors in the Borderland to find out what was happening to her. Cadena said all doctors would mistake the rare condition for common epilepsy.

They ended up finding a specialist in Phoenix, Az because El Paso does not have a pediatric epileptologist.

Since Lily was diagnosed, Cadena said her husband stopped working in order to take care of her as she needed constant monitoring.

With a plethora of medications and frequent doctor visits, Cadena explained, she finds herself in debt over $ 10,000 each year and receives no government assistance.

She hopes their fundraising will help find a cure for this debilitating disease and help more children be diagnosed earlier.

You can buy LGS bath bombs ($ 8) from In Bloom at 12301 Rojas Drive, preferably in cash as this facilitates donation transactions according to Chavira. All proceeds from the bath bombs will go to the LGS Foundation on Lily’s behalf.

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