Landon’s Journey

Landon Walker Dean was born in the early hours of May 23, 2023. Shortly after birth, he experienced breathing difficulties, leading to his transfer to the NICU for monitoring. Doctors also noticed low muscle tone and feeding challenges. An MRI later confirmed he had suffered a stroke before birth, and doctors observed hand contractures, prompting a referral to a geneticist.

After a week of waiting, Landon received a genetic diagnosis of Schaaf-Yang Syndrome (“SYS”), a rare genetic disorder caused by disruptions in the MAGEL2 gene on the 15th chromosome. SYS presents with symptoms including low muscle tone, feeding difficulties, joint contractures, sleep apnea, developmental delays, reduced growth hormone levels, and an increased risk of intellectual disability and autism spectrum disorder.

Before leaving the NICU, Landon underwent surgery to have a feeding tube inserted due to silent aspiration discovered during a swallow study. After a 35-day stay, Landon joyfully returned home on June 26, 2023, where he has been surrounded by love and exceptional care from family, friends, and dedicated medical professionals. Landon participates in weekly physical, occupational, and feeding therapy sessions, receiving ongoing support from specialists across various fields including neurology, genetics, developmental care, endocrinology, pulmonology, gastroenterology, ophthalmology, craniofacial issues, orthopedics, cardiology, and ENT.

Throughout his first year, Landon has steadily progressed in reaching developmental milestones. He enjoys sitting up with assistance, exploring his surroundings with infectious joy and a constant smile. Currently, Landon is focused on achieving goals such as standing independently, trying new foods, and mastering sitting without aid. Recently approved for human growth hormone therapy, Landon looks forward to enhancing his growth and continuing his developmental journey.