By Cheryl Conway
What a wonderful world it would be if there were two-for-one deals when it came to lung transplants.
Elsy and Walter Atencio of Netcong got a two-for-one deal when their identical twin girls were born on Sept. 6, 2004. They got yet another two for one deal five years ago when they learned that their two girls suffered from Childhood Interstitial Lung Disease, chILD, which is a group of rare lung diseases that can cause chronic cough, rapid breathing and shortness of breath.
Their one daughter, Sofia Maria Atencio, received a double lung transplant last Easter, Sun., March 27, at Children’s Hospital in Philadelphia, after being on the waiting list for 18 months since 2014. Her sister, Stefany Maria Atencio, went on the waiting list a year later in Oct. 2015, and is still waiting for her donor for the same procedure.
“My mom and brother woke me up,” recalls Sofia, seventh grader at the Netcong School. “My mom was crying and said ‘Guess what happened?’ I kept saying ‘We won the lottery? We are going to Disney Land?’ Then she said ‘no, something that you been waiting for.’ Then she said my lung transplant. Then, I remember that it was Easter morning, and I told them that the Easter bunny brought my lungs, and I remember crying.”
Sofia says she now feels like a normal person after faced with so many challenges such as “the struggles to breathe, and live, and fit in with the other kids;” and “no movies” still.
“She can’t go to the movies or crowded places, she can get sick easily,” her mom explains.
“My hopes for this new year is for Stefy to get her lungs, and looking to party on March 27th for my one year anniversary of my transplant,” says Sofia.
Stefany shares the same hope.
Her condition has left her “tired and not active as before. I can’t do anything because I get tired easily and fast, but I play my Ps4 all day!”
Unlike Sofia, Stefany is home-schooled as “She’s home all the time having to deal with the world of oxygen,” says her mom. They go to Philadelphia every other week so she can exercise, go for blood work monthly, meet with the pulmonologist. “You have to keep the phone with you 24/7,” waiting for that call to come in as there is only a short window to get to the hospital.
When she’s home, she enjoys playing with her 20-year old brother and “anything that involves dogs, and playing video games and my sister,” says Stefany.
Sofia got the transplant first because she was on the waiting list longer as she was “weaker than Stefany,” says Elsy. “She was in a wheelchair. She was in really bad shape. She was really tired even talking to us; it was really hard for her.”
Since the surgery, “Sofia is the joy of life,” says her mom. “She’s happy. She was doing Christmas gifts this year, stayed up until midnight. It’s another Sofia, full of energy and happiness. She’s at school getting good grades and making friends.”
With hope, prayer and some faith, Stefany awaits for her turn.
For the new year, Stefany looks forward to “My new Lungs and quality time with my parents because they work a lot,” she says.
She remains hopeful, “cause we believe in God, and we pray a lot. We know that miracles can happen, like Sofia.
Sofia and her mom offer some advice to others faced with similar situations.
Sofia wants “To tell all the kids not to complain on what they are fighting for and to believe.”
Elsy says, “I can offer other families waiting for transplants to have faith in God.”
The two girls were recently featured on the front page of the Gift of Life Family House newsletter. The Atencios had stayed there for about three months during Sofia’s transplant and recovery. During her sister’s surgery, Stefany became ill too and was also hospitalized at the same hospital.
Gift of Life Family House offers families of transplant patients of area transplant centers a place to stay.
“We were so blessed,” says Elsy. “They were so nice over there. That facility, it’s a beautiful place,” spotless, clean and even a gym for physical therapy. “They help people with low income. People were so nice to take care of you, people cooking meals for us. You feel like you are not alone. It was a big help.”
Charged $40 a day to stay there, Elsy says “you don’t feel frustrated” thinking “how we going to do this at a hotel?”
Gift of Life Family House, “They give a comfort. I feel so grateful. Sometimes you say things happen for a reason. People see how places can change a life. These are these places.”
Gift of Life Family House offers a “home away from home” for the families of transplant patients receiving medical treatment at one of the eight Philadelphia area transplant centers.