For Juju, precious time was wasted while his brain struggled under the seizure activity. Simple rescue meds would have stopped the episode and limited the risk of damage to his brain - but no one knew how to administer them.
“That kicked off a long back-and-forth battle with the school,” Juju’s mom, Cristina, explained. “They told me he wasn’t allowed to ride the school bus until they could find a nurse to ride with him. But weeks and weeks went by with no answers.”
It was a familiar story for Cristina and her son.
Five years ago, Juju was born a happy and healthy baby. It wasn’t until the age of two that Cristina noticed a slight speech delay. About 18 months later, Juju experienced his first seizure.
“His doctor assured me that it was just febrile seizures caused by a fever spike and said not to worry,” Cristina said. “But I knew something else was wrong.”
Eventually, she was able to get an appointment with a neurologist. That doctor only spoke with her through video, never examining Juju in person.
It took too many weeks - too many months - to get the answers they were looking for. Juju was diagnosed with epilepsy and began testing different medications to manage them. Even that wasn’t the whole story, though, and he underwent an MRI that indicated a T depletion, so they requested genetic testing.
“It’s ironic because early diagnosis is key, but we lost 12 months waiting on testing,” Cristina told us.
Cristina and Juju waited a year for results they never wanted to see. He was eventually diagnosed with CLN2 (Batten) disease, a terminal and progressive pediatric brain disorder.
Symptoms typically do not present until age 3, at which point children who were previously healthy and developing normally can suddenly experience seizures and language delays - like what happened to Juju. The condition rapidly progresses to dementia, the loss of the ability to walk and talk, and blindness.
By age 6, most affected children will be completely dependent on families and caregivers, and the condition is terminal.
“After his diagnosis, I was alone in the dark,” she quietly told us.
“But we have hope in the fact that there are so many different types of mutations for CLN2,” Cristina continued. “And Juju is his own person with his own path.”
Juju is a laid-back kid who loves playing with his toys, going to the park, and swimming. Even when his walking was impacted, he never wanted to stop moving. He’s silly and active and nearly always has a giant smile on his face.
Juju’s had a hard start for such a little guy, but with his mom and big sister, Faith, watching out for him, he’s got quite the family of advocates. Cristina is an aspiring lawyer, advocating for clinical trials for gene therapy and speaking with lawmakers as a registered rare disease legislative advocate. (CLN2 is so rare that Cristina is often educating the doctors on her son’s case).
That’s why the school bus incident was extra frustrating for her. She was used to getting things done and taking care of all of her son’s needs. And because the family didn’t have safe and reliable transportation - and no nurse was provided for them on the school bus - Cristina did the only thing she could think of to keep him in school.
“I called an Uber,” she said.
For weeks, Cristina paid for an Uber to take Juju to and from school every day. Without the funds to purchase a vehicle of their own, she didn’t know what else to do - and she knew Juju’s needs would eventually require an ADA van. “We don’t have the luxury of time.”
That foresight led her to a late-night Google search for wheelchair-accessible vehicles. And we’ll give you one guess which organization popped up to help support that need. (If you said Chive Charities, you would be correct.)
Time has not been on their side. It seems like they’re always waiting. Waiting for a diagnosis. Waiting for a seizure to end. Waiting for someone to help.
When we got their application, we didn’t want to make them wait any longer. Thanks to our unbelievable donor family - a group that constantly supports those who need it most - we were able to quickly approve and fund the purchase of a new wheelchair-accessible van for Juju for a total impact of $48,686.
“This lifts so much stress off my chest,” Cristina told us. “You have no idea what this means to us.”
At just five years old, Juju is already all too familiar with the preciousness of time. This family doesn’t waste a minute of it, and because of your selfless donations, they can enjoy more of it together. Lazy afternoons at the park. Floating on his back in the pool. Throwing a basketball into the hoop. And now, a new vehicle just for him, keeping that big smile on his face.
Time is precious for all of us, but especially for the rare medical individuals, Veterans, military families, and first responders we serve. Many are out there right now, waiting on a miracle of their own. Time might not be on their side - but you can be. Help us get to them faster and become a monthly subscriber. DONATE HERE.