7 Long Island Football Teams Rally For Coach's Son

Seven Long Island high school football teams will scrimmage on Aug. 30 in support of a coach's son who suffers from a rare genetic disorder.

Sammy Sands, the 9-year-old son of Sayville head football coach, Reade Sands, was diagnosed with cryptogenic Infantile Spasms at 6 months old and put on a medication that could lead to vision loss.

"We then moved on to daily injections of steroids which didn’t work," Sands said. "Our miracle drug was Depakote and we enjoyed 2 whole years with no seizures and clearer EEGs. We had hoped that he would develop and be 'normal' like his brothers. July of 2013, the seizures returned with a vengeance."

On Aug. 30, Sayville, Islip, Connetquot, West Islip, Bayport, Sachem North and Shoreham will face off in a seven-way scrimmage to raise money for research.

According to Sands, Sammy was suffering multiple daily seizures which stopped him from being able to attend school and progress. And in 2013, at the age of 3, Sammy had brain surgery in an effort to stop the seizures from attacking his whole brain.

"Sammy had a full Corpus Callusotomy-we cut his brain in half," Sands said. "Weeks after his surgery, Sammy walked for the first time all by himself Seizures were greatly minimized and we had our baby back Months later, I received a call from our neurologists giving me the results of a genetic test we had done months prior. We were given the news that Sammy had CDKL5-a disorder that affects the protein needed in the brain to develop normally."

Now 9 years old, Sammy can walk on his own but needs close supervision.

"He can babble, drink with a straw and feed himself with a fork," Sands said. "He is a student at Lincoln Ave. in the PALS program and thriving more than ever being in the Sayville Schools. While CDKL5 is a devastating disorder, we now have something to chase down and with this seemingly catastrophic diagnosis, we are finding hope. This is our new 'normal' and we are learning to never put limits on what Sammy can achieve. With more research, we get closer and closer to the possibility of healing our baby, of finding a cure for CDKL5, of helping him live a long and healthy life.

For more information, visit Sammy's website: http://www.teamsammysands.com/