Kim Spaide feels her daughter, Erika Spaide, all around her Kendall home, even after her death two years ago from Batten disease, a neurological disorder. Erika was two months shy of her 21st birthday.
The Spaides, including Kim and Erika’s older sister, Gina, say her life still lingers on. They feel closer to her when they look at her favorite giant Mickey Mouse balloon that now lays flat and deflated on the side of Erika’s bed.
“She was always a wild child, pretty much growing up as a kid, being in trouble all the time, but always having the attention on her,” Kim Spaide said. “I always told the doctors, she knew her life was short, so she’s making the best of everything.”
Batten disease is a rare and fatal neurological disorder that begins in childhood.
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To raise awareness of the disease, Kim will host “Bee-ing Erika Family Fun Day,” a fundraising party at Tropical Park. A $5 donation is asked for and the money will go toward Batten disease research.
“Last year was the anniversary of her passing,” Kim Spaide said. “It was a Sunday and I asked myself what I was going to do for her. I wanted to do something.”
Batten disease affects two to four people born in America out of every 100,000, according to the National Institute of Neurological Disorders and Stroke.
Dr. Philip Floyd, Erika’s doctor for more than 15 years, said Batten disease is so rare that Erika could very well be his only occurrence with it.
“Most pediatricians will never see a patient with that disease,” Floyd said. “So while I was remotely familiar with the disease when I first met Erika, I became intimately familiar with the disease over time. It’s one of the most challenging diseases to manage because there is no cure.”
The neurological disease is essentially a buildup of a pigment called lipofuscin in the brain, which over time results in neurological deterioration. It falls under a group of disorders called the neuronal ceroid lipofuscinoses, or NCLs.
Erika had the juvenile form of the disease — JNCL. This type begins in the early childhood years, usually affecting those around the ages 5 and 6.
“She was fine until she was 5,” Kim said. “She was actually born with the disease, but we never knew it because it’s a missing chromosome.”
Though the disease progresses at different rates once diagnosed, the usual early symptoms are clumsiness, seizures and loss of eye sight.
Eventually, those diagnosed lose cognitive function and enter a vegetative state. In most cases, the disease ends in respiratory failure or illness caused by breathing dysfunction.
Despite these symptoms, it was always important to Kim that her daughter live a normal and fun life.
She was notorious at the Children’s Rehab Network, a prescribed pediatric extended-care program in North Miami-Dade and South Miami, for throwing Erika big birthday parties.
The last birthday party for her daughter was gypsy-themed, with belly dancers and Erika’s favorite animals, horses.
“I always said, even after she passed, I would continue to do the parties because even though the school gives them a birthday cake [the kids in Children’s Rehab Network] come from homes where they don’t get many of these experiences,” Kim said.
‘Bee-ing Erika Family Fun Day’ will include several bounce houses, a live DJ, face painting, food trucks, raffles and special performances by local organizations Waving Hands, Paramount Dance Studios, Hip Hop Kidz, Academy of Arts & Minds Charter School and line dancing with Delvin Henry.
The money being raised will go into the Fight for Nicolas Foundation, a foundation started by Nancy Peruyero after her son, Nicolas, was diagnosed with the disease in 2009.
“When I got his diagnosis I was desperately searching for information on the internet about the disease and someone I could talk to that knew about this,” said Peruyero, who met Kim after reading about Erika’s story.
“Meeting Erika and her mom was a blessing to me. I finally found someone that knew exactly how I was feeling and since Erika had been diagnosed several years before Nicolas, Kim had expert advice for me.”
Last year, Kim’s ‘Bee-ing Erika Family Fun Day’ event raised approximately $2,200. This year, she wants to raise more money to help find a cure.
“I love Erika and miss her,” Dr. Floyd said. “Erika was one in a million, not because of her disease but because of her resilience, her and her family are just a phenomenal team.”