Addy M Has a smile that will light up a room

Solving The Mystery Diagnosis Was the Key to Addy’s Recovery

“Children’s Specialized Hospital gave us hope. They gave us a projected date when Addy would be going home and we all worked toward making that a reality.”

Uma Mena, Mother of Addy, age 2

Aditya “Addy” Mena loves to watch Yo Gabba Gabba! on the Nick Jr. TV channel. Addy’s mother, Uma, describes how Addy’s eyes light up when the program’s host, DJ Lance Rock, introduces the musical pre-school show along with his five toy co-stars: Brobee, the green little one, Foofa, the pink flower bubble, Muno, the red Cyclops, Plex, the robot and Toodee the blue-cat dragon.

Addy’s eyes also smile when he hears the voices of his parents, and is greeted by the nurses and therapists he spends most of his days with. Though Addy can’t lift his head or bop to the music on Yo Gabba Gabba! yet, Mrs. Mena is hopeful for the day when her son can stand on his own.

Addy was born prematurely at 33 weeks. When he first entered PSE&G Children’s Specialized Hospital in November 2011 at the age of six months, he weighed only six pounds. When he returned home from Children’s Specialized nine months later, in August 2012, Addy weighed closed to 26 pounds.

“We went for six months without a diagnosis for our son’s condition. At his worst, Addy lost consciousness and collapsed. We brought him to the ER in September 2011. He had no blood count. We thought we were going to lose him. It was a miracle Addy survived. Two months later, we were referred to Children’s Specialized Hospital. That’s when we started getting answers,” says Mrs. Mena.

Mrs. Mena says it was Dr. Angelo Palermo at the Infant Toddler Care unit at Children’s Specialized who helped the family gain a proper diagnosis for Addy’s condition. Dr. Palermo is one of a team of eight doctors who treat Addy.

“Dr. Palermo is so caring, every day he would come and visit Addy. He and the staff would constantly talk to me and my husband (Karthikeyan). Knowing Addy was in such good hands took a load off of us,” said Mrs. Mena. Another benefit says Mrs. Mena is that Addy’s hematologist is located at Robert Wood Johnson University Hospital, further enhancing the multidisciplinary and collaborative medical care required in Addy’s case.

addy with parents

Addy has a rare form of anemia. He breaths with the help of a portable ventilator that attaches to a tracheostomy tube in his neck. A gastrostomy tube (G-Tube) is connected to Addy’s abdomen for feedings so that he can gain the proper nutrients. Addy requires daily speech therapy and physical therapy to keep his muscles toned and a blood transfusion once every four to five weeks. While foods are cautiously being introduced to his diet, Addy relies on a special formula for daily nourishment.

“Children’s Specialized Hospital gave us hope. They gave us a projected date when Addy would be going home and we all worked toward making that a reality,” said Mrs. Mena.