Josiah Lorenzini's life was short and filled with stays in the hospital.

Although he lost his battle with a rare genetic disorder last fall, his family in Butler are determined to keep his memory alive and help other sick children at Children's Hospital of Pittsburgh of UPMC through a toy drive.

Heather Lorenzini, said Josiah, the youngest of her five children, was born May 12, 2009.

“I had four other children. At two months I knew something was wrong,” she said.

Lorenzini said it was 10 months before her son was diagnosed as suffering from Menkes Disease.

“It is a genetic disorder. Patients who have it have a problem with absorbing copper from their intestines,” said Dr. Scott Maurer, a palliative medicine specialist at Children's Hospital and one of Josiah's doctors.

“They are missing a protein that takes copper out of the food we eat and gives it to the body for all the things we need copper for,” Maurer said.

“The body uses copper for a lot of different functions. It is important in the way our hair is formed, in the pigmentation of our skin and the development of our muscles,” said Maurer.

“It's usually found at three to four months,” said Lorenzini. “Symptoms are mostly developmental delay, feeding issues, seizures and weak muscle tone.”

“He couldn't eat. He had a feeding tube,” she said and Josiah was confined to a wheelchair.

“My husband (Brian) had to carry him up the stairs,” she said.

Lorenzini said Josiah was admitted to Childrens Hospital 18 times, sometimes for days or weeks.

“We've been Life-flighted. We've been in an ambulance. It's what they don't tell you when you have a new baby,” said Lorenzini. “We'd come home and we'd be back three days later.”

Carol May, the manager of the supportive care program at Children's, got to know Josiah and his family.

May said Josiah's condition “caused him to have sloppy muscle tone and seizures, and he would have a lot of respiratory distress and require a lot of respiratory intervention.”

“He was developmentally delayed, but he would smile and laugh. He always knew his mom and dad and siblings,” she said.

Lorenzini said there is no cure for Menkes Disease.

“Its victims almost always die in the first 10 years of life,” she said.

Unfortunately, Josiah was not able to beat the odds.

Maurer said Josiah died on Oct. 18 of respiratory failure.

“Essentially, his brain became so sick it couldn't send the proper signals to keep him breathing or clear the secretions in his throat,” he said.

Lorenzini said that because she and her family spent so much time at Children's Hospital, they decided the best way to honor his memory is to have a toy drive to benefit the hospital's current patients.

That's good news to Denise Esposto, manager of the child life department at Children's Hospital.

She said she and her staff of 33 assistants and therapists work to get children used to the hospital.

“We have medical play, arts, distractions, anything that gets them back to a normal and comfortable existence,” said Esposto. “We have 13 playrooms, that's where the toys come in handy.”

May said the 300-bed hospital sees about two birthdays a day and with various holiday celebrations, the institution goes through a lot of toys.

On those occasions, May said, toys are often given to patients to keep.

“My department relies totally on donations to restock toys,” Esposto said. “You can imagine the volume of toys. We get a lot patients, and we get a lot of use.”

Lorenzini said the toy drive is accepting new toys only. The hospital forbids remote-controlled toys or friction-powered devices.

She has set up collection boxes where she works, Kiddie City, 330 Whitestown Road; and at Reichhold's Cafe, 772 Pittsburgh Road and King Cones Castle, 566 Evans City Road.

Joining in the effort are Josiah's brother and sisters: Amanda, 21; Kayla 18; Cierra, 14; and Isiah, 6.

“We've had a pretty good response so far, but we need lots more,” Lorenzini said. “I'm trying to get the word out to more people.”

Lorenzini said she is being supported by her fellow congregants at Victory Family Church in Cranberry Township.

The drive will end May 3, Lorenzini said, and the toys will be taken to Children's Hospital close to what would have been Josiah's fourth birthday.

Collection boxes for the Lorenzini family's toy drive in memory of Josiah for Children's Hospital of Pittsburgh of UPMC are at:King Cones Castle, 566 Evans City RoadKiddie City, 330 Whitestown RoadReichhold's Cafe, 772 Pittsburgh RoadFor more information or to arrange drop-offs or pickups, call 412-614-9114 or e-mail the7lorenzinis@hotmail.com.