Stephen Monaco was a healthy, rambunctious kid until he fell ill and never recovered. The Woodbridge boy has a rare metabolic disorder. His mother Jana has taken care of him for the past 10 years.
"Our life kind of changed back when he was three years old,” said Jana Monaco. "It took away all of his abilities. It took away everything."
Staff at the Children's National Medical Center know the pain endured by parents of sick children. “I’ve had many families describe it as the crisis of a lifetime,” said Christina Lloyd.
They embarked on a remarkable project. Parents who persevered through uncertainty are writing letters and recording their stories of struggle and success to help families facing a similar challenge cope better.
Jana Monaco wrote a letter. "It brings me great comfort to know that this letter with really help ease a new family's fears,” she said.
Brandi Powell received one of the letters of support from a fellow parent. Her son Alex was born with only half a brain.
“We prepared that if he wasn't meant to be here that God was meant to take him, that's the way it was. He just happened to be a fighter,” she said of her son Alex, who is now 16 years old.
The Germantown teen will probably need therapy for the rest of his life. The letters, Powell says, gave her strength. "After I read the first letter, I was hooked,” she said.
Powell finds comfort from this virtual support group. "It's very empowering to know that if they can do it we can do it, too,” she said.
Parents stressed that the letter project helped empower them be the best advocate possible for their child.
Find out more about the projects on its website, www.aparentsletter.com.