LUIS: RESILIENT AND BRAVE

Luis was two years old when he started complaining about back pain. Linda, Luis’ grandma, took him to his pediatrician who suggested that Luis was probably constipated. A few days later, while playing on the playground, Linda noticed that Luis was hunched over and walking strangely, then he was in too much pain to sit in his car seat.

Immediately recognizing that this was more than constipation, Linda took Luis to a pediatric orthopedist who scheduled an MRI. The MRI showed a Spinal AVM (Arteriovenous malformation - a rare abnormal tangle of blood vessels on, in or near the spinal cord) living at the bottom of Luis’ spine, near his bladder. Linda was in shock and so scared. A spinal AVM at Luis’ age is very rare and very rare for it to be found on the spine.

On November 9, 2016 Luis had a spinal laminectomy and was in the hospital for a full week. From there, Luis was admitted to PSE&G Children’s Specialized Hospital in New Brunswick. He arrived at the hospital in tremendous pain, having to lie flat and completely still for 48 hours and taking a lot of medication.

Linda was unsure if Luis would ever walk again. But the doctors and therapists got Luis working on his physical and occupational therapy right away. Linda stayed with Luis every night and his great grandma was with him every day. They watched as the therapists helped Luis to gradually relearn all his skills…sitting-up, stretching, eating, crawling, standing and eventually walking.

 Luis gets MRI’s periodically to confirm that the AVM has not returned. He continued outpatient therapy at Children’s for 2 years after he was discharged from the inpatient program. Linda says, “Nothing holds him back! He loves to play sports and he especially loves rock climbing!” She is grateful for the care Luis received at Children’s.