Zaylen was born at 34 weeks and weighing 4lb 7 oz. From birth he had an uphill battle as he couldn’t keep his temperatures and blood sugars up. Zaylen spent 2 weeks in the hospital after he was born getting blood sugars checks every 4 hours while on IV antibiotics for rule out sepsis. Once his sugars stabilized, we were sent home. Little did our family know how soon we would be returning. At 4 months old an incidental finding showed Zaylen had enlarged ventricles and he was diagnosed with non-obstructive hydrocephalus. While hospitalized and getting worked up for rule out seizures at 6 months, an exploratory scope diagnosed Zaylen with a laryngeal cleft. They injected Botox into the cleft to decrease the chocking episodes and Zaylen was started on a thick liquid/pureed diet to also help with decreasing the choking and aspiration episodes. Zaylen started speech therapy we were so happy with all his progress.

At 2 years old Zaylen had his first brain surgery and did amazing. He has a ETV with a reservoir. He was admitted later in the year to have his laryngeal cleft stitched closed. After his PICU stay he blossomed into a happy toddler. Unfortunately, a few months after turned he 2.5, he had to be hospitalized for vomiting. A simple observation stay led to us fighting for our son’s life. He went into septic shock, had to intubated, and eventually was diagnosed with Enterovirus D71. This rare brain virus led to 2 PICU stays and an emergency brain surgery. Zaylen was diagnosed with both obstructive and non-obstructive hydrocephalus and had to have a shunt placed. After this virus rattled his little body, he was left unable to walk, talk, or eat. A long-term tube feed was placed and Zaylen spent 2 months in the hospital learning all his developmental milestones. We went to children’s rehab and Zaylen happily rode around in a wheelchair while relearning how to crawl, walk, talk, and eat. After 1 year of speech, occupational, and physical therapy Zaylen had regained most of developmental milestones. After Zaylen’s third birthday, he continued to get sick and had to be hospitalized for metapneumovirus. He is followed by immunology, and they are ruling out SAD (specific antibody deficiency). His labs still show multiple food allergies- eggs, tree nuts, and shellfish. However, his immune system is doing much better. Zaylen is extremely friendly, loving, and full of compassion. No matter what obstacles he has to overcome, his resilience and will to dedication to get better always ends on top!