(LOS ANGELES) — Four-year-old Colorado Springs girl Lucy Cadenas, the namesake for Lucy’s Warrior Foundation, is recovering in the hospital after a successful hemispherectomy at UCLA’s Ronald Reagan Medical Center. Janey Sprouse-Cadenas and Caity Colvin, Lucy’s parents and founders of the foundation, gave FOX21 an exclusive update on Lucy’s hemimegalencephaly (HME) treatment.

As FOX21 previously reported, Lucy was born with a rare neurological disorder that causes the left side of her brain to grow disproportionately larger than the right side of her brain, leading to frequent, life-threatening seizures. 

Sprouse-Cadenas and Colvin decided to make the expensive and enduring trip to California to have Lucy undergo a functional hemispherectomy to not only end the seizures but to give Lucy the chance of a normal life once she recovers.

“A hemispherectomy is separating the one hemisphere [of the brain] from the other and from the body. So in Lucy’s case, it was her left side that was unhealthy. It had all the mutated genes that were causing the dangerous seizures, and it was her entire left side,” Colvin explained. The surgery being “functional” meaning that the detached hemisphere is still intact in the skull.

Sprouse-Cadenas has been researching various ways of treatment for Lucy since she was born, ultimately following the advice of Lucy’s local neurologist and pediatrician in Colorado Springs to begin treatment with Dr. Aria Fallah of UCLA, where he suggested, and later performed a hemispherectomy.

“[Dr. Fallah] said he needed to take his time to make sure he got every connection. If there was one missed, if he had to go back in to do the surgery again, he would likely suggest an anatomical [hemispherectomy] to remove it,” Colvin said. “Right now based off of the imaging that he has seen, he is confident that he got all of the connections for Lucy.”

The successful surgery was initially slated for eight hours but lasted 12 hours to ensure no connections were missed.

“The reason why I advocate the way that I advocate is… what if it was a family that doesn’t ask questions? What if it was a family that was scared to challenge them and say, this does not sound right?” Sprouse-Cadenas said.

Sprouse-Cadenas and Colvin have both learned since having Lucy that communication and building a relationship with your health providers is essential. 

“To be in the position where I respect them enough and they respect me enough for us to be able to communicate that way is such a rarity,” Sprouse-Cadenas said. “That’s something that I really, really advocate for people to do. You have to build those relationships in such a positive and healthy way with them, or you’re never going to be successful with that care and treatment for yourself or your child or your partner or whomever it is.”

Lucy’s Warrior Foundation is not just an avenue of support for Lucy but for other families in Colorado with children afflicted with rare disorders and epilepsy. By sharing Lucy’s journey and story, Janey hopes the foundation will continue to grow into a nationwide nonprofit to help families outside of Colorado too.

“In the moment, it’s all about Lucy,” Sprouse-Cadenas said. “Eventually, I want that to grow bigger and beyond Lucy, but her journey is meant to be shared. That is why she’s here.”

Lucy is expected to do extensive therapy to regain mobility and regular speech once she is cleared to do so. The family is expected to return to Colorado around the first week of February 2024.

For more updates and ways to support Lucy and her family, stay tuned to FOX21news.com and the family’s blog.