Cloverleaf Syndrome is a type of craniosynostosis in which there is premature closure of multiple or all bones of the skull. This condition causes the head to form a cloverleaf shape. Some deformities associated with Cloverleaf Syndrome include: larger than normal head, facial malformations, multiple breathing and feeding issues as well as hydrocephalus which is water on the brain. Alex has demonstrated some measure of all of these conditions. This rare circumstance is not well known or understood in the medical field.

Alex had survived so far with support from his family and strength drawn from a divine source.  He has the spirit of a rambunctious toddler and a will to live that is so strong he has become an inspiration and a miracle to all of us. By the time Alex was five days old, he had undergone his first skull surgery.  It's very hard to even recognize your own child after this sort of surgery. His tiny head was swollen the size of a balloon, his eyes had been glued shut and his every breath was dependent on a ventilator.

Most of us are never called upon to endure such agony but for Alex it was just the beginning; his parents, Richard and Terri, came to the realization that this was only the first step in a long journey.

First 12 Months  (next)   (top)
For the next few months the phrase "failure to thrive" was heard in relation to Alex. He struggled to maintain his weight; in fact, he stayed at 8 pounds for 6 months, dehydrated and on the verge of a feeding tube. Three more surgeries came in quick succession. First a VP Shunt was implanted to help drain fluid from his brain.

His second skull surgery was completed five months after he was born followed by a chiari decompression to help him eat.  After this series of surgeries Alex began to respond well.

Age 1-2  (next)  (top)
First birthdays are special in anyone's life and Alex is no exception. Born with Clover Leaf Syndrome it's amazing to everyone that he made it. But Alex had other plans, he was beginning to thrive.

Like many issues that families deal with one problem seems to bring on others and the Schon family is no exception. In June of the following year, Alex's dad was let go from his job. The cross-country trips to hospitals for second opinions and time off work proved too much for his employer. The reason the company gave was downsizing.

It's very difficult to get others to understand the time commitment that is required when your child needs constant family support and medical attention.

Over the next six months Alex struggled with seizures. With the cause of the seizures unknown, his medical team went to work. By Christmas his seizures were under control and his family enjoyed their best Holidays ever.
 

Age 3-4  (top)
At three years of age, Alex began to branch out into the community through gymboree, pre-school and mom-tot events. It was the perfect opportunity for Alex to make new friends and learn about the world at large. His desire to learn about the world was just as strong as any three year old. His weekly schedule included physical therapy, occupational therapy and speech therapy. Looming in the near future was his mid-face cranio-facial surgery and possibly a repeat chiari surgery. By this time, these surgical events were a way of life for Alex . . .but that didn’t make them any easier. Alex continued to amaze his parents and family with all the progress he made though. He had the go-get'em attitude of a typical busy three year old and had begun to verbalize.

He was doing his best to assimilate himself into the educational pre-school environment with other kids his age. This also exposed him to people who didn’t understand his condition. These encounters could lead to emotional setbacks for Alex and his parents.

This was exactly the case this past year with Richard, Terri and Alex.

Alex started experiencing apnea related episodes that were life threatening. It was decided in December 2003 that Alex would need a chiari decompression surgery. The surgery was performed at Miami Children’s Hospital, by Dr. Glenn Morrison, and was a great success. The most interesting result of the surgery was that Alex started talking for the first time right after the surgery! Unfortunately, however, the episodes continued and it seemed apparent that another expansion surgery would be needed.

The Schon’s traveled to Philadelphia, PA and Dallas, TX to meet with doctors and discuss the best options for Alex. With even more knowledge behind them, Richard and Terri ultimately decided that the best choice for Alex would again be Miami Children’s Hospital. On July 2nd, 2004, Alex underwent a complete monoblock advancement. It was initially determined that Alex would be fitted with a RED (Rigid External Distraction) device, but his side skull bones were too thin to support the device. Alex’s surgery lasted 8 hours, with a 10 day post-op hospital stay, that was a huge success. It was also determined that his seizure medications needed to be adjusted and so far Alex has been doing fantastic.

The Present  (top)
This is Alex’s second year at a full-time pre-school called The Princeton House Charter School.  Alex has responded amazingly well to this environment.  With the schools help and because of the Schon Family Medical funds success, the Schon’s have been able to provide Alex with daily speech, physical and occupational therapy.  Alex knows his alphabet, how to spell and recognize his name, all his colors, and can count to 30!  He is speaking in three-word phrases, eating a lot more “adult” table food without trouble, and is fully potty-trained.  Alex still has his challenges, but is becoming a very independent pre-schooler.

Please join with us to help Alex overcome Cloverleaf Syndrome and Cranio Facial differences. Even though some of the procedures are covered by medical insurance, many are not; not to mention the expense of traveling to hospitals, overnight stays, and time off the job.  Please help make Alex’s future bright.  Donations to The Schon Family Medical Fund can be made at The Schon Family Medical page.

Thank you for taking the time to care.