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Alex’s Story

The Alexander Foundation was founded to honor the inspiring story of Alex Schon. Here’s his journey:

Alex Schon was born in Orlando, Florida, in May 2000 to Richard and Terri Schon. He was born six weeks premature and diagnosed with a rare condition called Cloverleaf Syndrome, a type of craniosynostosis where multiple skull bones close prematurely. This condition resulted in a cloverleaf-shaped head, a larger-than-normal head, facial malformations, and various health challenges, including breathing and feeding issues, as well as hydrocephalus (fluid on the brain). At the time of his birth, only 139 cases of Cloverleaf Syndrome had been reported worldwide, making it largely unknown in the medical community. Doctors initially gave Alex a poor prognosis, predicting he would not survive.

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During his first year, Alex faced significant challenges, often hearing terms like "failure to thrive" and "surgery." He struggled to gain weight and stay hydrated, undergoing three major surgeries in his first year: a VP shunt to drain brain fluid, a full craniotomy, and a chiari decompression to assist with eating. Against the odds, he celebrated his first birthday, though he soon began experiencing seizures, which became manageable after several months of medical visits.

By age two, Alex was starting to engage with the community through Gymboree, preschool, and mom-tot events. His curiosity about the world was strong, but he also needed physical, occupational, and speech therapies to address his challenges. At three, he began full-time preschool at The Princeton House Charter School, where he thrived in a supportive environment. He started eating table food, was fully potty-trained, and learned basic literacy and math skills.

In December of that year, Alex experienced life-threatening apnea episodes, leading to another chiari decompression surgery. This surgery, performed by Dr. Glenn Morrison at Miami Children’s Hospital, was successful and even allowed Alex to speak for the first time. However, apnea episodes persisted, prompting his parents to seek a more complex surgery—monoblock advancement—to pull his skull and facial bones forward for brain growth. This 8-hour surgery was a success, and after adjusting his seizure medications, the apnea episodes ceased.

At age six, Alex transitioned to a zoned public elementary school, where he faced challenges with staff discomfort regarding his medical history. After a year, his parents moved him to Windy Ridge Elementary School, which had a dedicated ESE department, where Alex flourished.

During this time, Alex successfully began using a CPAP machine to improve his sleep efficiency, which had previously been critically low. He also underwent eye surgery and heel cord lengthening surgery, both of which were successful.

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When it was time for middle school, Alex attended Morning Star School, a private Catholic school known for its inclusive environment. He thrived there, graduating high school in June 2022. While his family celebrated his accomplishments, they were also apprehensive about the future, as Morning Star had become a safe haven for Alex.

The summer before his final year, Alex underwent another complex surgery at Miami Children’s Hospital. This procedure involved moving his mid-face forward and implanting a Rigid External Distractor (RED) to treat his sleep apnea, which had worsened over time. The surgery included a temporary tracheostomy due to anticipated swelling. Though it came with complications, Alex’s resilience shone through, and 18 months later, he had the trach removed and was sleeping well.

Since graduating, Alex has sought a meaningful place in his community. He found a great fit with Lift Disability, which launched a pilot program called Elevate for adults with special needs. At Elevate, Alex participates in social events, local field trips, and volunteering, making new friends and connections in Orlando.

Now 24 years old, Alex’s family is contemplating his future care needs as they navigate the emotional process of planning for a time when they may no longer be able to care for him. Thankfully, Alex has no surgeries planned, and they all hope to keep it that way.

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How the Foundation Started

When Alex was born, there were not many places his family could go for information or help with regard to Cloverleaf Syndrome. It was with this in mind that the Schon family was inspired to start The Alexander Foundation. They wanted to give families with children afflicted with Cloverleaf Syndrome and other craniofacial issues a place to go for help and information.

Growing Up With Alex

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