This year’s event will take place on August 16, 2020 at Stone Bridge Golf & Country Club, and the committee will be honoring the Robertello family.

 

Carl and Amanda were expecting their first born child in December of 2019.  Their son Graham was born on December 5th at Rome Memorial Hospital.  Graham was born missing skin all over his body.  He was immediately rushed to the NICU at Crouse Hospital in Syracuse where they all remained for the next 3 weeks.  They learned Graham was born with a disease called Epidermolysis Bullosa, his type is the rarest called Recessive Dystrophic Epidermolysis Bullosa. Doctor’s and the family scrambled to learn as much as they could about this rare disease.  This disease is a lack of the collagen proteins that hold the skin together.  Minor friction and movement of any kind causes blistering of the body and chronic open wounds, it further affects his mucus membranes causing impact to his internal organs and mouth.  Eating is even difficult as it results daily with blistering in his mouth.  Despite the pain associated with this disease Graham somehow continues to smile

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Graham requires daily dressings of medical grade Vaseline gauze, medical grade gauze to secure the Vaseline gauze, and tubular netting in order to protect his skin, all of which is costly and uncovered by insurance.  Currently, this disease cannot be cured, it can only be comforted and cared for.  The family is on a waiting list for Cincinnati Children’s Hospital, but COVID has caused a standstill and increased the wait time.

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