(MONUMENT, Colo.) – On Sunday, the Monument Ice Rinks hosted an Iron Man Fight and silent auction in support of local foundation Lucy’s Warrior.
Lucy Cadenas, 4, has experienced regular seizures since she was born. Her mother, Janey Sprouse-Cadenas, was told by doctors that Lucy had a rare neurological condition called Hemimegalencephaly (HME) and that her life expectancy was short.
Frustrated with the lack of resources in the Pikes Peak region for HME treatment, Janey wanted to advocate for her daughter and for other children in similar situations. Thus, Lucy’s Warrior Foundation was born, with a mission to help parents and children eight and under with epilepsy and/or rare disorders in Colorado.
“Finding support and outlets and retreats for parents that go through this and helping in that sense, but then also encouraging parents and educating them on advocacy. It’s okay to ask the doctors questions,” Janey said. “It’s okay to challenge the answers in a very respectful way.”
Janey has been overwhelmed with the support her family has received from the southern Colorado community, including Monument Ice Rinks who helped organize the Iron Man Fight and silent auction to gather the community to support Lucy.
“Ultimately, we’re looking to provide support to families, to provide funding for them to really mentally, emotionally, physically be there for them,” Janey said. “To support the whole family, not just the child because while they are the ones going through it, the whole family essentially suffers through it too.”
HME caused Lucy’s genes to mutate leading to Lucy’s left side of her brain growing disproportionately larger than the right side of her brain which leads to life-threatening seizures that are resistant to most medications and to a Vagus Nerve Simulator.
Lucy’s condition only allows neurosurgery as an option to manage and treat the disorder. The Cadenas family traveled to UCLA Ronald Reagan Medical Center to determine the specific type of neurosurgery Lucy would need, racking up more medical bills than expected. With Lucy’s upcoming hemispherectomy surgery in January, the Cadenas family needed help and support.
“We are just trying to get day by day at the moment. There are some days where it feels like I can’t breathe. There’s days where I think about whether or not I’m going to lose my daughter, whether or not I’m making the right choice, whether or not this is even going to help,” Janey said, holding back tears. “And then there’s other days when I look at her and I’m like, Lucy will get through absolutely everything and Lucy is going to survive just fine and she’s going to come out on top.”
The silent auction serves as a fundraiser for Lucy’s upcoming surgery, where she will be spending about a month in California in extensive outpatient therapy, with half of that time staying in a hotel out-of-pocket until she is cleared to leave.
The foundation hopes to one day be able to become a nationwide non-profit helping families outside of Colorado too.
“Whatever we can pull from [the auction] to help us through that process will be that, and then whatever extra we have, we want to pour into Lucy’s nonprofit so that we can start helping make sure that other families can do this too,” Janey said.
