Ronnie Polaneczky: The fine line that Mia lives on: Should she be denied a vital kidney transplant?

IF YOU DON'T know the name Amelia Rivera, you will soon. Her story is going viral as I type this.

It's no wonder. Amelia is the embodiment of our ongoing moral debate about whom we let live, whom we let go and the line that separates the two.

It's a line that, thanks to medical technology and uneven access to its life-saving powers, continues to blur and shift.

Three-year-old Amelia ("Mia" to her Stratford, N.J., parents, Chrissy and Joe, and her big brothers, Joey and Nathan) was born with Wolf-Hirschhorn syndrome. The rare genetic condition has left her profoundly mentally impaired. She also is disabled. She cannot walk, speak or eat (she receives nutrition through a feeding tube). But she can roll over, hold a toy and interact in ways that her family recognizes as communication.

"She knows who we are, and she is happy," says Chrissy, 36, a high-school English teacher. "She is a snuggler and a cuddler. She loves her brothers and they love her. They want her with them, even at their sports games."

When Mia was diagnosed, her parents were told she would die within two to five years. Chrissy's own research, though, has turned up cases of of patients living well into adulthood.

"We are taking her life a day at a time," she says.

Mia's kidneys are small and will likely fail within the year. So her nephrologist at Children's Hospital of Philadelphia referred Chrissy and Joe to representatives from CHOP's kidney-transplant team for a consultation.

According to an account that Chrissy posted last week on www.wolfhirschhorn.org, a parent website, she and Joe were told that Mia isn't suitable for transplant.

Why? Because Mia is mentally retarded.

Chrissy is emphatic that this was the only reason offered, as Mia's overall health has been stable since August, when she had successful heart surgery

Chrissy says that, even when she told the team that she or Joe would donate a kidney to Mia, the team said that CHOP wouldn't perform the surgery.

"I said, 'If she doesn't get this transplant, she will die. Are you saying that six months from now we should let her die?' " recalls Chrissy. "The doctor said, 'Yes.' "

Obviously, Chrissy's allegation is shocking. So, I wish I could offer CHOP's version of this story. But CHOP did not return calls for comment yesterday. The hospital did, however, issue a general statement on its Facebook page in response to Chrissy's post, which has elicited charged reaction, especially among parents of disabled children.