Diagnosed with a rare genetic disorder at the age of 5, Ariana Ramos of Tulare was only expected to live until the age of 13. Now 25, she’s a teacher’s assistant alongside her mother who owns and teaches at a daycare in Tulare. Ramos has beaten the odds, thus far
, due to Medi-Cal assistance that helps pay for ongoing medication and regular doctor’s visits. But possible cuts to Medi-Cal funding threaten Ramos’ future.
, due to Medi-Cal assistance that helps pay for ongoing medication and regular doctor’s visits. But possible cuts to Medi-Cal funding threaten Ramos’ future.“We’re on borrowed time,” said Maria Lopez, Ramos’ mom. “I try to enjoy her as much as I can and spend as much time with her as possible.”
Ramos has a rare disorder called Mucopolysaccharidosis VII (MPS V11), also known as Sly syndrome. It’s so rare that during the time of diagnosis, doctors told Lopez that her daughter was only the second person in the United States to have this aggressive genetic disorder.
Sly syndrome is caused by a lack of an enzyme that breaks down large sugar molecules. The absence of this enzyme leads to a buildup in the body’s tissues and organs and can cause various musculoskeletal abnormities that worsen with age. For Ramos, Sly syndrome has led to limited mobility and learning disabilities.
“When she was a toddler, she started displaying speech problems, which doctors thought might be caused by reoccurring ear infections,” said Lopez. “Then, when she was in the third grade, she couldn’t get inside of the car because her legs were so stiff and her back hurt her.”
But things would soon change after doctors helped Ramos enroll in a clinical trial. The clinical trial pays for Ramos’ genetic infusions every two weeks, but it doesn’t cover medications or regular doctor’s visits.
“I’m a single mom on a teacher’s budget,” said Lopez. “My daughter’s life and all her medical needs depend on Medi-Cal. If she doesn’t receive her medicine, she’ll go right back to where she was before.”
Ramos receives specialized care from Raul Ayala, MD, who leads multidisciplinary teams at Adventist Health Complex Care in Hanford and Selma. The teams care for patients who are facing complex concerns while in treatment for high-risk conditions, such as diabetes, bipolar disorders, depression, homelessness, schizophrenia, substance abuse disorders, and medical disabilities.
When Ariana needs to see a cardiologist for her heart murmur, or needs her eyes checked for a condition called corneal clouding, Dr. Ayala refers her to specialists who are all covered under Medi-Cal.
“Healthcare is complex, but there is power of partnerships to address the needs of our community members,” said Dr. Ayala who coordinates with specialists around the Central Valley to find the care his patients desperately need for improved health.
Lopez said these specialized visits have made an impact on her daughter’s quality of life.
“Growing up, Ariana told me she wanted to be a teacher like me, so opening the daycare was the best way I knew how to help her fulfill that dream,” said Lopez. “It was a way for her to feel as though her life matters and that she has a purpose in this world.”
Nearly 15 million people in the Central Valley are enrolled in Medi-Cal and could be at risk of losing healthcare coverage if cuts are approved.