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Despite rare syndrome, Adam Paulraj turns 2 today

Adam Phaulraj was born with Bartsocas-Papas syndrome, of which there are only 24 known cases. He is currently undergoing a series of surgeries at UNC Hospitals.
Adam Phaulraj was born with Bartsocas-Papas syndrome, of which there are only 24 known cases. He is currently undergoing a series of surgeries at UNC Hospitals.

Parenthood brings its fair share of smiles and tears to any new mom or dad, but when Raja and Jessica Paulraj were not even sure if their adopted son would live another day, they were more often than not brought to their knees.

The Paulrajs have carried their adopted son, Adam, through 15 surgeries at UNC Hospitals for a syndrome so rare that only 26 cases have been documented in the world.

Bartsocas-Papas syndrome left Adam with no eyelids, an undeveloped nose, fused limbs, a cleft lip and a cleft palate. U.S. insurance barriers and a lack of medical resources in India, where the couple lived, left the pair with little money to pay for Adam’s operations and few options.

They were told not to adopt him and that it would be too taxing. One friend warned that adopting Adam would interfere with their Christian mission work, which they’ve both dedicated larger parts of their lives to.

At the missionary hospital in a rural Indian town at the foothills of the Himalayan Mountains, where Adam had been left in a cardboard box, the chief of pediatrics said Adam would probably only live to be two months old, at most.

Today, the family celebrates Adam’s second birthday.

And while most parents dread their child’s “terrible twos,” the family is thanking God for them.

“We were kind of thinking it wouldn’t come, but we are seeing the temper tantrums,” Raja Paulraj said. “That’s something that is sort of rewarding for us to see, that he’s on track. He’s not just lying down in his bed receiving his feeding, just idle.”

Idle, Adam certainly isn’t. He playfully punches and wiggles his way out of any mischief he gets himself into, especially when it comes to competing against his 1-year-old brother, Elliot — but that wasn’t always the case.

“…The Spirit you received brought about your adoption to sonship.”

Born on Sept. 18, 2011 in Assam, India, Adam was in desperate need of care.

His feet were plastered underneath him — the skin on his upper and lower legs webbed together. He had no eyelids, making it a challenge to sleep the necessary 16 hours a day as a newborn.

A partially formed nose, palate and lips left Adam with a large open space in his face, and he was born with just one finger. He couldn’t breathe without a tracheotomy tube, which he still uses.

For Adam to have survived was remarkable. Most children with Bartsocas-Papas die in utero or shortly after birth. But he was born to parents who couldn’t keep him.

Because it is illegal in India to abandon a child, Adam’s biological parents would have been required to take him home, where Adam may have very well been poisoned if someone didn’t intervene, as the Paulrajs later learned.

But baby Adam soon fell into the hands of fate and the loving arms of Raja and Jessica Paulraj, who had just married six months before.

The two worked at Burrows Memorial Christian Hospital, where Raja served as chief and a psychiatrist and Jessica was teaching nursing school, when Adam was born.

After hearing Adam’s story, the Paulrajs had to act quickly, but their decision was based on ceaseless prayer.

Raja Paulraj said he and his wife believe that though people cannot always control what happens to them, everyone deserves to know love. And with that, their mission quickly shifted from their work at the hospital to serving Adam, their son.

“Your eyes saw my unformed body.”

Though the choice to adopt Adam became clear, it left the couple with serious decisions to make.

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At first, they didn’t think there was anything they could do to improve Adam’s condition besides making him comfortable in what they thought were numbered days.

But hope came in the form of a team of eight surgeons from UNC Hospitals, led by plastic surgeon Dr. John van Aalst, as well as countless pediatricians, specialists and nurses. Van Aalst learned about Adam from a mutual friend of Jessica Paulraj, and he agreed to perform the surgeries free of charge.

That meant, however, that the family would have to be uprooted from the country it loves. India is as much of a home to American-born Jessica Paulraj, a 26-year-old with curly red hair and a self-professed pilgrim heart, as it is to native-born Raja Paulraj, whose childlike dimples still show through at 32.

While Raja Paulraj said they were reluctant to move to the United States, they knew the care Adam would receive at UNC Hospitals would be worth it.

Though the Paulrajs had a team of surgeons standing behind them, they quickly realized the bills Adam’s surgeries would generate would be too large for UNC Hospitals to foot on its own.

Because Adam is not a U.S. citizen, he is ineligible for health insurance — so his ability to receive treatment hinges entirely on donations from the community.

Van Aalst said he had to take Adam’s case on a surgery-by-surgery basis.

“Two years ago, we were concerned with raising the money for the first surgery, doing the first surgery, raising the money for the next set of surgeries,” van Aalst said.

One little girl gave $12.18, all she had. A man donated $157 instead of spending the money on pair of boots.

Before Adam received his first operation in 2011, the family raised $100,000 within six days through its blog.

While the numbers have still not been finalized for 2013, Jessica Paulraj said they have received somewhere between $250,000 and $300,000 to cover surgery expenses in both 2012 and 2013.

Help has also come in the form of an offer from Carrboro resident Dana Senior. After hearing the family didn’t have a place to stay, she offered up the third floor of her home.

“We came here for dinner, and we stayed for six months,” Raja Paulraj said, laughing.

“…Beauty for ashes, the oil of joy for mourning.”

Senior said the Paulrajs have provided her with more blessings than she could ever provide them.

“If I saw Adam at the hospital, I hope I would’ve done the same thing, picked him up and said ‘I can’t let this happen,’” she said. “But I would say to myself, ‘Oh my gosh, I can’t do this,’ and I can’t. That’s why God didn’t give him to me.”

Those who look at Adam today will see deformities, though remarkably diminished, but a child full of life nevertheless. He’s a stout little man who likes Christmas lights, golf hats and the piano.

Unlike most toddlers, Adam doesn’t bang all the piano’s keys at once — he strokes them with care, one key at a time. He leans as closely to the instrument as he possibly can, partly because he’s nearsighted, mostly because he might just be the next Mozart.

But before he sells out Carnegie Hall, he has plans to celebrate his birthday in his mother’s hometown of Jacksonville, Fla. with brother Elliot, whose birthday is just four days earlier.

Now with a closed palate, Adam has extra reason to celebrate: birthday cake — but just a taste — he’s still undergoing food aversion therapy and is primarily fed through a stomach tube.

After that, it’s back to India for a year of no surgeries, only discussions of a future nose reconstruction. But even with a busy month of travel ahead of them, there is calmness in Raja and Jessica’s hearts as they reflect on the blessings Adam has brought them.

“Life on the grand scheme just seems like a disorder of death and a pile of ashes, but Adam and the beauty that his life is shows beautiful things can come out of even the most seemingly hopeless circumstances,” Jessica Paulraj said.

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