The Alexander Foundation - Funding and Research For Cloverleaf Syndrome

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 (next) (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.

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.

Alex 5-6 (next) (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.

Alex 7-8 (next) (top)
Alex is now 7 years old and it is very hard to believe that 7 years have gone by. Alex has had a fantastic year and continues to amaze all of us with his spirit and ability to thrive in spite of many challenges that he faces everyday.

The most exciting news is that Alex has been successfully wearing a CPAP mask at night while he sleeps. This has helped unbelievably with Alex’s sleep apnea. He had a sleep study last March that showed he was having 76 respiratory episodes per hour. Basically, he was only sleeping at a 7% efficiency rate (really not at all!) We knew that he was not getting any sleep and also were very worried because he was just struggling so much at night to breath. We were using oxygen but it was giving us a false sense of security and the doctors became extremely concerned. They admitted Alex into the hospital and ran tests to ensure that his heart was not damaged due to his continued struggling. Luckily there was no damage to his heart and CPAP therapy was started right away. Unfortunately Alex was scared and would not tolerate the CPAP so it did not work at all. The doctors met with us and advised that he would need to have a tracheotomy right away. We were concerned and nervous and just wanted to take him home and see if he would tolerate CPAP for us. Aunt Cathy had a great idea and had us get pictures of Uncle Steve and Uncle Mike wearing their CPAP masks at night so that Alex wouldn’t feel so alone. Well, that did it. He started to wear it and has not stopped since! He has been doing fantastic. We are hoping when he has his jaw advancement (at age 13 or so) that it will improve his anatomy so that he won’t need the CPAP anymore. We are so thankful that he could avoid such a seriously invasive surgery.

We also made the decision to start Alex in our zoned public elementary school, Palm Lake. The Princeton House was our safety net but we thought it was time and that Alex would be ready for regular education peers. It was a very challenging year. Alex amazed by how well he transitioned into another school. The Princeton House was the only school he ever knew and he started Palm Lake and made friends right away. Unfortunately, Alex’s medical condition and delays in development made the staff at Palm Lake uncomfortable and it was not the most productive year. We have learned a lot about education and the school system. Alex did unbelievably well with the other kids and the class was very helpful socially for him. He talks up a storm now and really has made great gains in his language skills.

In December, Alex had a 2nd eye muscle surgery to help with his eyes “drifting and bouncing.” The surgery went very well and was a success.

In February, Alex had heel cord lengthening surgery. This was a complete success in helping Alex to get his heels down when he walks and help eliminate his toe walking. He had a very hard month, had two casts and was in a wheelchair for most of the time but came through it like a trooper.

Just a few weeks ago he had to have 5 teeth removed. We have learned that the older and smarter he gets the harder the surgeries are.

All in all we just can’t stop counting our blessings. At the end of the day, Alex is a happy, sensitive and caring child. For his birthday he had a bowling party with pizza, music and friends that he will have for life.

The Present (top)
In the last year, it has been relatively quiet. No surgeries. Knock on wood.

That isn't to say the Schon's haven't had their share of surprises and their share of "gut checks" to make sure they are paying attention. Recently, Alex's parents took Alex to a Neurosurgeon who did some early operations. They walked out of his office "shocked" that he wanted to do another surgery. A big one. He wanted to open him and expand his head. This is a big surgery that Alex had when he was much younger...several times. When the doctor said this, Alex, in true Alex spirit, leaned over to Dad and said "Dad, we don't need this Doctor anymore".

Because of Alex's rare condition, because of the significant work of the Foundation, the Schon family has been able to make terrific connections with phenomenal world renown doctors in Miami. Miami is four hours from Orlando, where Alex lives now. The Foundation has helped with these trips. The Schon's took the trek to Miami and simply treated it as a routine visit.

Well, Alex is like a rock star in Miami. The Doctor's love him. He's interesting, a case they may never see again. He's smiling. He's progressing. He's goofy and they know he's traveled a long way to see them. So, they take extra time and extra care when they get to Alex and the Schon's. This trip was no exception. In fact, the Schon's think that Alex has been such a bright spot of one of the Doctors, he would see him anywhere. It's truly amazing.

Well, you're wondering what they said? They said he looks great! No surgery! One of the doctors suggested he see a orthodontist for some early work before possible surgery at age 11-13. The orthodontist trip wasn’t so uneventful. Alex will be getting braces immediately following this trip. He has three to four teeth moving into the position for one. This is happening all throughout his mouth. We were wondering why we keep yelling to keep his hands out of his mouth.

Besides the braces, things are going fairly normal for Alex. Because Alex has had seizures in the past, the Schon's looked into a "guide dog" to help sleep with Alex. Hopefully the right dog would recognize a seizure and alert Mom and Dad. The perfect dog appeared within a couple weeks. His name is "Shadow". He is the best for Alex. Alex gets up every morning lets him out and feeds him. They are best friends. This dog is trained and is being trained to be a guide dog for Alex.

In addition, Alex continues to have tutoring and lots of attention to his deficiencies. He will be in 2nd grade in two weeks. He is at his third school. This is always a tough one. Getting the right mix between not enough and too much for his condition is mind boggling. Terri, Alex's mom really takes this challenge and gets the best out of the situation.

Without the support of the Foundation and Trust, the Schon’s truly would have a tough road. It has allowed them to see the best doctors, to have the best therapists, to try the newest procedures and simply to help with medications, therapies, doctors visits and anything else that pops up for a child with special needs.

Alex’s Mom and Dad would like to thank each and every one of you that took time out of your day to become a part of Alex’s. It truly is a blessing. Thank you.

Thank you for taking the time to care.