Cristina Vargus is on a mission. Her 6-year-old son Julius, who she lovingly refers to as Juju, has a smile that lights up a room and an unwavering sense of determination that matches his mom’s.
From when she first started noticing speech and developmental delays when he was just 2 years old to his first seizure at age 3 and his eventual diagnosis with CLN2 Batten disease in May 2021, Cristina has tirelessly advocated to get Juju the best possible care. CLN2 is an extremely rare neurodegenerative lysosomal storage disease, and the genetic variants in Juju’s case are even more rare, so Cristina has now dedicated herself to researching this disease and advocating for the whole CLN2 community.
Cristina is an expert at advocating for Juju – speaking on panels at FDA meetings, meeting with US senators, and being honored with awards in recognition of her advocacy work. But, until a friend referred her to the Child Neurology Foundation (CNF) during a time of financial uncertainty, Cristina never had the opportunity to advocate for herself.
The numerous hospital visits, appointments, and challenges associated with managing the care of a medically complex child ultimately caused Cristina to lose her job earlier this year. With her husband working long hours and all her time devoted to managing Juju’s care, Cristina’s bills were piling up and she didn’t know where to turn for support. A friend encouraged her to contact CNF and Cristina was quickly connected with our social worker, Vivian Medrano.
After learning more about Cristina’s situation, Vivian was able to connect her to organizations providing financial and respite care resources. Additionally, during their conversation Vivian and Cristina discussed Juju’s changing needs as he’s getting older. Vivian is currently working to put Cristina in touch with an organization that assists with home modifications for families of children with special care requirements, like installing a lift to make it easier to transport Juju up and down the stairs.
Unsurprisingly, Cristina’s experience with CNF has ignited her determination to support other caregivers. She wants them to know that they’re not alone. As she puts it “support is more than financial, mental and emotional – sometimes they just need to know that support simply exists.”
Thanks to the generosity of our community, CNF was able to provide direct support to over 470 families like Cristina’s this year. However, there are countless more families who still need our help. Please make a year-end gift to CNF and help us ensure nobody has to walk this journey alone.
Thank you for joining with us to shape a better tomorrow for our community,
Director of Development | Child Neurology Foundation