Beef and Beer
For Nicholas DeLorenzo
Saturday, May 30th, 7pm
We don’t know how strong we are until our only choice is to be strong. That’s what I’ve had to say to myself since my family started our unexpected journey in 2005. When my son Nicholas was 6 months years old he had his first seizure. Our world changed when he reached age one and we learned he had Isodicentric 15 (a chromosomal disorder) and infantile spasm (a form or epilepsy). His chromosomal disorder results from duplications of chromosome 15q11.2-13.1 (Dup 15). As a result Nicholas faces many global development delays. He suffers with many gross motor and language delays delays. He has difficulty walking and standing up and is non-verbal. Nicholas is also diagnosed with an autism spectrum disorder, anxiety disorder, ADD and experiences fine motor and cognitive delays.
Needless to say, our journey hasn’t been an easy one. He has been to three schools. Nick receives ABA therapy, music therapy, speech therapy, occupational therapy, physical therapy, and horse therapy. Since he was 1 we have tried different combinations and doses of SIX different anti-epileptic drugs. The doctors also put him on a restrictive specialized diet which showed no effect. His seizures and medicine often make him tired which causes him to sleep many hours a day.
Despite everything he has been through Nick is a fun loving 10 year old boy. He loves music, plays the bells and maraca in chorus. He loves being outside especially when it’s sunny. He loves going to the beach, going swimming, and doing horse therapy. We thank God each and every day for giving him to us and we want to do everything we can to have him reach his fullest potential. Because of the complexity of his case and his chromosome abnormality Nick has been fortunate enough to be selected for an exciting drug trial! The medication has proven promising for reduction and suppression of the seizures in patients like Nick.
We are trying to raise money to help offset the cost of Nick’s medical expenses. Please join us for a night of fun. Your support would be much appreciated.
Included: Beer, wine, soft drinks, and food