Local store helps girl collect donations for research of a rare type of epilepsy

El Paso News

EL PASO, Texas (KTSM) — Local bath products retailer In Bloom is selling bath bombs shaped like Lennox-Gastaut Syndrome awareness ribbons to raise money for an El Paso teen diagnosed with the rare disease.

Lily Cadena,16, was diagnosed with LGS when she was 4 years old. Her mom, Tifni Cadena, explains that the disease is a rare type of epilepsy that causes different types of seizures that occur on a daily basis.

“Triggers are unique for every person. For her, it’s the low-pressure system, when she’s overly tired or overly stimulated,” Tifni Cadena said.

She said Lily has to take a cocktail of medications that help control the seizures, but there is still no cure for the disease. Lily sometimes experiences seizures that cause her body to suddenly freeze and drop on the ground, often causing injuries, even with constant supervision.

“It limits her from doing things that she really loves and that’s the really sad part,” her mother said, explaining how Lily loves to go to baseball games, but is often unable to because of her seizures.

Tifni Cadena said Lily’s 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 while she is singing and dancing so she doesn’t fall and have a seizure, so it’s a family affair,” she said.

Cynthia Chavira is Cadena’s neighbor and the owner of In Bloom. She partnered with Lily’s mom to create bath bombs shaped like an LGS awareness ribbon to raise funds on Lily’s behalf.

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

The proceeds from the bath bombs will be donated to the LGS Foundation, which Cadena says is helping fund LGS research.

Before Lily was diagnosed, Cadena and her husband visited many different doctors in the Borderland to find out what was happening to her. Cadena said any doctors mistook this rare disease with common epilepsy.

They ended up finding a specialist in Phoenix, Ariz., because El Paso doesn’t have a pediatric epileptologist, which specializes in the treatment of epilepsy.

Since Lily was diagnosed, Cadena said her husband stopped working to be her full-time caretaker. With a plethora of medication and frequent doctor’s visits, Cadena explained, she faces medical debt of more than $10,000 each year, with no additional support. She hopes their fundraiser will help in finding a cure for the disease and help more children be diagnosed sooner.

You can buy LGS bath bombs for $8 at In Bloom, located at 12301 Rojas Drive. Chavira said cash is preferred as it makes donation transactions easier. All proceedings from the bath bombs will go to LGS Foundation in Lily’s name.

For more information about LGS, visit www.lgsfoundation.org.

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