On January 28, 2015, my nephew, Caleb Rodriguez suffered severe hypoglycemic seizures of unknown causes, which left him with profound neurological deficits.
Before this event, Caleb was healthy and thriving, playing soccer, swimming, memorizing Bible verses, and taking care of his younger sister, Journey. He was completely bilingual (English and Mandarin) and becoming trilingual at his Spanish immersion pre-school. After the seizures, Caleb was in a coma for two days. When he woke up, he couldn’t move his limbs, hold up his head or swallow. He received his daily nutrition through a surgically-inserted G-tube in his stomach, which is still used daily to administer medication and liquids. The brain damage caused by seizures ultimately resulted in complete loss of fine motor skills, an inability to communicate and severely impaired vision.
Their Needs: Many caring and concerned people have asked us, “How can we help?” Until now, even with Marcus in grad school, he and Julia have been trying to manage Caleb’s medical expenses with the help of family, savings and insurance. However, growing financial concerns have led them to recognize that it is time to ask for help.
Caleb’s ongoing treatment and care involves many peripheral costs that are not covered by insurance and exceed their current income. Some are minor one-time expenses, like a cuddle swing ($100) a weighted blanket ($150), or AAC devices ($200). Other expenses are large, such as a seizure response dog ($14,000), and ongoing, such as insurance deductibles/co-pays ($7,000 per year) and an exceptional live-in caregiver (“Dulce”) who assists in caring for Caleb 40+ hours per week ($30,000+ per year).
Caleb’s current condition: After months of intensive inpatient therapy, Caleb regained the ability to sit, stand and eventually walk. In fact, he likes to constantly climb, roll and move around (with a very unsteady gait). However, because he is legally blind and has the cognitive and social functioning of an infant, he needs constant supervision.
He is also still completely unable to speak. The only way he can express himself is by screaming. According to the nurse at his preschool, he screams an average of 18 times every five minutes, which at times pushes his caregivers to their psychological limits. Some days he is inconsolable for several hours. The best way to soothe him is to hold him, which is challenging because he weighs more than 50 pounds.
Around the time he began screaming (April 2015), Caleb also began to experience frequent seizures, including tonic, drop, absence, and reflex seizures. On a good day, he has about 20 seizures, and on a very bad day he can have more than 100, too many to count. The seizures also cause him to wake up several times per night, which can also push caregivers to their psychological limits. Neurologists have not yet been able to control his epilepsy with medications. Last week, Caleb had a surgery to install a Vagal Nerve Stimulator, which is like a pacemaker for his brain, designed to reduce seizures.
To prevent hypoglycemic seizures, particularly at night, his diet also needs to be monitored carefully. This is why his caregiver, Dulce, and service dog, “Joshua,” are Caleb’s best insurance against another devastating episode like the one that occurred in January 2015.
Please help our sweet Caleb by donating what you can and by sharing this request far and wide. On behalf of Marcus and Julia and our entire family, thank you for your love, prayers, and support.
Martin Rodriguez (Caleb’s Uncle)
PS: You can also email [email protected] to learn about other ways to contribute.