Alex’s Story

The reason that The Alexander Foundation was founded was because Alex Schon inspired it.  Here is his story:

Alexander (Alex) Schon was born in Orlando, FL in May of 2000, the son of Richard and Terri Schon.  He was 6 weeks premature and was afflicted with a type of craniosynostosis called Cloverleaf Syndrome, which is when there is a premature closure of multiple or all of the bones of the skull.  Some of this conditions deformities include:  the head to form a cloverleaf shape, a larger than normal head, facial malformations, multiple breathing and feeding issues, as well as hydrocephalus (water on the brain).  This rare circumstance is not well known in the medical field – in fact, Alex was one of only 139 reported cases world-wide. The doctor’s prognosis at birth was very poor and survival was not expected.

Alex’s first year knew the words “failure to thrive” and “surgery” well.  Alex struggled to maintain weight and to stay hydrated.  He had three major surgeries in his first 12 months of life; he had a VP shunt implanted to drain fluid from his brain, a skull surgery and a chiari decompression to help him eat.  His first birthday came and went much to the surprise of the many doctors that worked with him.  Alex then began a struggle with seizures, but within 6 months, those, too, were under control.

By the age of two , Alex began to branch out into the community through Gymboree, pre-school and mom-tot events.  His desire to learn about the world was as strong as any two year-olds.  Unlike most two year-olds however, Alex had physical, occupational and speech therapy and the possibility loomed that he would need a mid-face cranio-facial surgery and another chiari surgery.  When Alex turned 3 he started pre-school full time at The Princeton House Charter School and responded amazingly well to his environment.  While he still had his weekly speech, physical and occupational therapies, he was starting to function more healthily.  He started eating adult table food, was fully potty-trained and began to learn basic alphabetical and numerical funtions.

In December of that year, Alex started experiencing apnea related episodes that were life threatening.  It was decided that he would need another chiari decompression.  So, in December 2003, the surgery was performed by Dr. Glenn Morrison, at Miami Children’s Hospital, and it successfully helped alleviate some syptoms and Alex started talking for the first time right after surgery!  Unfortunately, the life-threatening apnea episodes continued.  So, after some research in Philadelphia and Dallas, Alex’s parents decided Miami Children’s Hospital was still the best choice for his monoblock advancement.  This is when the facial bones are surgically pulled forward to allow growth.  It was first thought that Alex would be fitted for a RED (Rigid External Distraction) but his side bones were too thin and could not accommodate the device so the advancement was done surgically all at one time.  Alex’s surgery lasted 8 hours with a 10-day post-op stay, but was a huge success!  Between the surgery and adjusting Alex’s seizure medications, the apnea related episodes stopped.

By age 6, Alex’s parents decided to enroll him in their zoned public elementary school.  They felt that The Princeton House had been their safety net and that Alex was ready for regular education peers.  The year proved to be a challenge.  While Alex transitioned well, made new friends and began to talk up a storm, the staff was uncomfortable with Alex’s medical conditions and delayed development. This taught Alex’s family a lot about education and the school system, which was challenging.  At 7, Alex’s parents moved Alex to another elementary school where they had a more dedicated ESE department called Windy Ridge.

Also, during this year, Alex began successfully wearing a CPAP mask at night while he slept.  It was determined that he was sleeping at only a 7% efficiency rate and was struggling to breathe.  After some coaxing (or showing Alex that his Uncle Mike and Uncle Steve wear a CPAP), Alex started wearing his.  Alex also had eye surgery to help his eyes from drifting and bouncing, and he had heel cord lengthening surgery to help him walk.  Both of the surgeries were successful.

Currently, Alex is 10 years old and doing very well in school.   He is still going to Windy Ridge School, where he is in a dedicated ESE room. There are 7 students in his class along with his teacher and 3 additional para-professionals.

This ratio allows Alex to have the one-on-one assistance that he needs with his core subjects.  His entire class goes to a 2^nd grade regular education class for the afternoon, which is co-taught by his teacher and the regular education teacher.  This enables him to be with regular education peers, while at the same time have the comfort and support of his teacher and students from his morning class.  Alex has also recently started basketball and bowling with the Special Olympics, which has been an awesome experience for him.  One of Alex’s favorite hobbies is watching The Food Network and the Cooking Channel and helping his parents make meals.

How The Foundation Started

When Alex was born, there were not many places his family could go for information or help in regards 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 cranio-facial issues a place to go for help and information.