CHESTERFIELD, Va. -- Zuzi and Andy Johansen never expected to make so many cherished memories.
Little Anna Hope, their first child, arrived in this world facing enormous odds, on March 20, 2013.
Their daughter was diagnosed with genetic disorder Trisomy 18; a diagnosis that most babies don’t survive past pregnancy.
The Johansens never planned on leaving the hospital with Anna.
“To me there were few things more terrifying than setting up a nursery and not coming home with a baby,” Zuzi said.
“Initially the doctor held her and immediately put her on her stomach because she didn’t think she would take maybe a breath or two,” Andy said.
But Anna surprised everyone in the delivery room.
“Actually, we weren’t prepared for what did happen and that was she lived through it all,” Zuzi said.
An overjoyed Andy and Zuzi said help arrived that was heaven sent.
“The next day there was a knock at the door and when we opened it there was a team of people from Noah’s Children who brought us everything,” Zuzi said.
Noah's Children is a pediatric hospice group that helps children diagnosed with life-threatening illnesses and their families.
“We don’t concentrate on death,” said founder Dr. Bob Archuleta. “We concentrate on living life and on maximizing living life every day to the fullest. “
Archuleta said Noah’s Children meets emotional and physical needs of parents; like tackling mountains of medical red tape.
“It is very satisfying to know that love and care can make a big difference with these families,” Archuleta said.
The nonprofit’s staff of doctors and nurses also provide social and spiritual solace -- all at no cost.
“It was a touching thing,” Andy said. “Even thinking about it always hits me.”
Noah’s Children allow parents like Andy and Zuzi to focus on what matters most.
“She was an absolutely engaging and beautiful child who has I think inspired an entire community,” Archuleta said.
Sadly, Anna Hope lost her courageous battle before her first birthday.
“She came into this world being held,” Zuzi said. “She passed away in my arms with her parents there, her grandparents there, and her friends from Noah’s Children sat with us as she passed.”
The grateful Johansens said Noah’s Children helped guide them through their own stormy seas while making memories with their bundle of joy.
“We don’t look back with sorrow and grief,” Andy said. “We were given eight and half months we were told we would never have. We took advantage of it.”