- The Enterprise
- The Recorder
First, Amy Hoffman had to get over the surprise that she was having twins, but following a standard blood test, another shocker popped up.
One of her fraternal sons had spina bifida, a congenital birth defect where the backbone and spinal canal do not close before birth.
Although Hoffman is a nurse, she didn’t know much about spina bifida and spent her pregnancy learning about it.
When the boys were born, Josh did have spina bifida, club feet and mental retardation.
His brother Jake was born healthy.
Despite their differences in health, in true twin fashion, the brothers couldn’t be apart for too long.
“They are very close,” Hoffman said. “You couldn’t separate them. They even slept in the same crib.”
Maybe because they were her first born and she had no frame of reference, Hoffman said that once the boys were born, even if one had special needs, she just dove into motherhood.
There were more doctors’ appointments, and Josh had to go through physical therapy for his club feet, but life went on and Josh developed a cheery and easygoing personality.
“It’s a lot of work, but you realized that you are blessed,” said Hoffman, who works as a hospice nurse. “He’s up for anything, anytime.”
Josh uses a wheelchair, which can limit his activities, but the family did get a chance to visit Disney World in Orlando, Fla., thanks to the Sunshine Foundation, a nonprofit organization that makes dreams come true for children who are chronically ill or have been seriously abused.
Pennsylvania police officer Bill Sample founded the organization in 1976 when he took out a personal loan for $4,000 to help send a 4-year-old leukemia patient and his family to the Pocono Mountains to play in the snow.
The foundation is the original wish-granting organization for children, according to Shannon Connolly, the marketing manager for the group.
Sunshine Foundation, which has granted more than 36,000 dreams since 1976 for children 3 to 18, is mostly run on volunteer efforts, Connolly said.
There are 14 chapters around the country, and fundraisers are held to fuel the dream granting.
Sample is also credited with shedding light on Hutchinson-Gilford Progeria Syndrome, also known as the aging disease, Connolly said.
The foundation also holds Dreamlifts from time to time, a day trip to its Dream Village for kids who can’t take extended vacations for various reasons.
The foundation’s Dream Village in Orlando is wheelchair accessible, Connolly said, from the showers to a wheelchair-accessible swing and pool.
The village hosted the Hoffmans, including Amy’s boyfriend and their daughter, Julianne Hayden, 9, last month for five days. While in Florida, the family got to visit Disney World, Sea World and Universal.
Back home in Newburg, the Hoffman twins attend different schools — Jake is a freshman at Maurice J. McDonough and Josh takes life skills classes at Piccowaxen Middle School, where he gets along with everyone, his mother said, not only his classmates but teachers and maintenance staff.
“He’s very social. He’s called the mayor of Piccowaxen,” Hoffman said, adding that Josh is involved with Special Olympics and was one of the first kids in the county to play T-ball in a wheelchair.
Every six months he and his mother travel to Johns Hopkins Hospital to visit a team of doctors for follow ups.
They sit in one room and the doctors come to them.
Josh has had nine shunts in his head to drain the fluid that can build on his brain.
Despite the trials, Josh remains upbeat, his mom said.
“He’s always busy. I try to keep him active,” Hoffman said. “He’s happy when he’s around a group of people.”