Jeannette twins to get stem cells to fight rare disease

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When Audra and Jason Trapletti of Jeannette sit down to Thanksgiving dinner, they will give special thanks for the support of family and community.

The couple's 8-month-old twin daughters, Avria and Aubrey, were diagnosed this fall with a very rare form of combined immunodeficiency, which leaves them unable to combat infections.

The family must wrap its life around the condition: When her husband, Jason, 29, comes home from work at Bank of America, Downtown, he must shower and change into clean clothes before he can hold the girls, to avoid exposing them to viruses or bacteria from the outside world.

Hence, Thanksgiving at Audra's parents' house will be a small celebration, with only the Traplettis, their daughters, her parents and her brother and sister, Audra Trapletti said.

Mrs. Trapletti, 26, said she is grateful for staff at Children's Hospital of Pittsburgh of UPMC, for the support of her loving extended family, and for God, who she said answered the prayers to bring the girls home for Thanksgiving.

On Oct. 2, Aubrey was taken to Children's by ambulance after her lips and fingernails turned purple from lack of oxygen. She was found to have a type of pneumonia usually seen in people with suppressed immune systems and was put on a ventilator for a while.

Mrs. Trapletti said the doctors wanted to examine Avria because they thought that, as an identical twin, she must have the same condition. Avria was found to have the same type of pneumonia with the same underlying immune deficiency condition.

Hey Chong and Brian Modena of Children's and other doctors from several teams there spent hours doing tests to find out what was making the girls sick and diagnosed them with a rare form of combined immunodeficiency that affects only about 150 children worldwide, Dr. Chong said.

This year, Dr. Chong started an immune deficiency clinic at Children's to help diagnose people with immune disorders.

In addition to curing the pneumonia, staff at Children's had to reverse an allergic reaction to medicines that caused Aubrey's eyes to swell shut and gave Avria a rash. After both conditions were resolved, the girls were released from the hospital on Nov. 8.

Doctors said their best chance is stem cell transplants from umbilical cord blood.

Four sets of umbilical cord blood, two from babies in the United States and two from babies abroad, were found to be good matches for the girls, Mrs. Trapletti said.

She said in the third week of December, her daughters will enter Children's for the transplant.

First, they will undergo 10 days of chemotherapy to destroy their own, faulty bone marrow. The doctors will wait until the chemo drugs are out of their systems and then infuse them with the umbilical cord stem cells, which will form new marrow in the girls' bones.

Each girl will receive one set of saved umbilical cord blood.

Then, the twins will stay at Children's for four to six weeks and go to Ronald McDonald House for another two months so doctors can monitor them to make sure the stem cell transplants "take."

"The first 100 days [after the transplant] are the most crucial," Mrs. Trapletti said.

Dr. Modena said the girls have white blood cells, but the cells lack MHC class II molecules, which allow white blood cells to fight infections.

If all goes as planned, the new bone marrow will start to produce white blood cells with every factor needed to give the girls healthy immune systems, he said.

Last weekend, more than 820 people attended a benefit at Pluma Restaurant in Irwin to raise money for medical expenses. Mr. Trapletti's health insurance will cover some, but not all, of the expenses.

Another benefit for the twins will be held Dec. 8 at Chick-fil-A Restaurant in Eastgate Plaza near Greensburg. Every diner that day who mentions Avria and Aubrey will have 20 percent of the cost of their meal donated to the girls' medical expense fund.

The fund has been set up at all PNC Bank branches, including the former Irwin Bank and Trust Co. in Irwin. Checks for the fund can be made payable to the Avria & Aubrey Trapletti Charity Fund. Checks that have the word "and" rather than an ampersand (&) are being returned by the bank, Mrs. Trapletti noted.

A Facebook page has news about the girls at facebook.com/avriaaubreyscidawareness.

neigh_east - neigh_westmoreland

Anne Cloonan, freelance writer: suburbanliving@post-gazette.com.


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