Updated:JEANNETTE, Pa. —
The Trapletti identical twins seemed perfect when they were born in January.
Audra Trapletti’s pregnancy was uneventful. The delivery was routine, and the girls went home after only two days in the hospital.
But something gnawed at Audra Trapletti, even though Aubrey and Avria’s check-ups were always normal.
“I just always thought that there was something wrong, and I never knew what because every check-up was great,” said Trapletti, 26, of Jeannette.
Last month, Trapletti and her husband, Jason, 29, learned that both girls have a rare disorder that impacts their immune systems, leaving them unable to fight infections.
After spending a month in Children’s Hospital of Pittsburgh, the twins face chemotherapy and stem cell transplants in an attempt to cure them of Severe Combined Immune Deficiency, or SCID.
The Traplettis have family, friends and even strangers behind them — people who have planned a benefit event Saturday to help the couple pay bills. Jason Trapletti has been on unpaid leave from work.
”Words cannot express how thankful we are and how grateful we are to live in a community that’s so caring and to have family and friends who are just caring as well,” Audra Trapletti said.
The moral support people have given through a Facebook page set up to keep people apprised of the girls’ journey has kept the couple upbeat.
That journey began on Oct. 2 when Audra Trapletti’s sister noticed Aubrey’s fingernails were purple.
Aubrey had gotten a stomach bug when she was about 6 months old that she had not fully recovered from, Audra Trapletti said. But the change in her nail color, which spread to her lips, was alarming.
Aubrey went to the emergency room, where doctors determined her oxygen level was dangerously low and sent her to Children’s Hospital of Pittsburgh. She was diagnosed with a form of pneumonia typically seen in people with suppressed immune systems.
“They went through test after test after test to rule out all the things it could possibly be,” Trapletti said.“They figured now they were looking at something more severe, as far as an immune deficiency.”
Aubrey was put on a ventilator.
“I’m thinking, ‘Please, God, just let her make it,’ because now she was really sick,” Trapletti said.
As Aubrey fought the infection, doctors asked to examine Avria.
A week after Aubrey was admitted to Children’s, her sister was diagnosed with the same type of pneumonia.
“I was going from one room of my child intubated to another room of my child being up and needing me,” Trapletti said.
For the most part, she stayed with Aubrey and Jason stayed with Avria.
After three weeks, they finally learned that the twins have a rare form of SCID.
“The doctors explained they have what they need for a working immune system, but it’s like having a set of soldiers and not having any weapons,” Audra Trapletti said.
Though the diagnosis was difficult to hear, it was a blessing.
“Now we knew what we were facing, and we knew a (stem cell) transplant was the only way to go,” she said.
The diagnosis wasn’t the end of the fight.
Every time the girls seemed to improve, they had to fight off something else. Both developed rashes from medications. Aubrey spiked a high fever.
Doctors managed to stabilize both girls, and they were released from the hospital on Nov. 8.
“They’re just seriously miracle workers,” Audra Trapletti said of the physicians. “I feel they’re angels.”
The girls take several medications to ward off infections and they must go to Children’s twice a week for check-ups.
“They look great,” Trapletti said. “They’re eating like champions and they are drinking like champions.”
As long as they stay healthy, they will be admitted to Children’s in late December to start 10 days of chemotherapy.
Then they will receive stem cell transplants, most likely using umbilical cord blood. A bone marrow transplant is an option, but Trapletti said the doctors feel more confident with a cord blood transplant.
The girls will spend a month to six weeks in the hospital, then will live at Ronald McDonald House for another month or two so doctors can monitor their response.
The Traplettis hope their experience makes people more aware of SCID. They would like to see all newborns tested for the disease The Pennsylvania Department of Health is working toward.
“If they do, they can transplant them right away and save their lives and save families from going through what we have,” Audra Trapletti said.
The experience has made them grateful.
“The caring thoughts and the words of people helps so much when you’re going through something like this because it shows you that you aren’t going through this alone,” Trapletti said. “To do this alone is impossible. It’s nice to know that people care.”
A benefit for the girls will be held in Irwin on Saturday and donations are also being accepted at PNC Bank branches.
How to Help
What: The Avria & Aubrey Trapletti Charity Fund Benefit
Where: Pluma, 100 Colony Drive, Irwin
When: Saturday, 4-10 p.m.
Cost: Suggested minimum donation: $12 in advance, $15 at the door. Free for children 3 and younger.
Contact: Laura Albensi at 724-864-8880 or Laura Hoffman at 724-396-8297 to purchase tickets in advance.
Donations for the family are being accepted at PNC Bank branches. Make checks payable to the Avria & Aubrey Trapletti Charity Fund.
This article was written by Channel 11's news exchange partners at TribLIVE.