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A New York boy who joined Pennsylvania’s Sarah Murnaghan in challenging the nation’s organ transplant rules has received a new set of lungs, his mother said Monday.
Javier Acosta, of the Bronx, underwent a transplant on Oct. 13, four months after his mother filed a successful lawsuit to allow him to be considered as an adolescent instead of a child on the transplant waiting list. But because he had turned 12, the cut-off age, his lungs came from an older donor, his lawyer said.
The boy, who suffers from cystic fibrosis, remains hospitalized, but his prognosis is good and he is “doing fine,” his mother, Milagros Martinez, said in a statement.
“I waited to share this news until after he recovered from surgery,” said Martinez, whose older son died in 2009 from cystic fibrosis, an inherited genetic disease.
Javier was 11 when he joined Sarah Murnaghan, then 10, in a quest by their parents to force the Organ Procurement and Transplantation Network, OPTN, to change rules that prevented children younger than 12 from being considered for adult organs based on how sick they were. Under existing rules, organs for children are allocated differently than those for teens and adults. Teens and adults receive an LAS score, which assigns relative priority to allow the sickest patients to move to the front of the line.
Within each organ procurement organization, or OPO, lungs from donors ages 12 to 17 are offered to all pediatric patients before they're offered to adults. Children younger than 12 can get lungs from adult donors, but only if the lungs are declined by adolescents and adults.
The parents argued that the existing rules penalized their children and made them wait for organs from adults regardless of the severity of their illness. After two lawsuits and a court order, OPTN created a process under which families could apply for exemptions to the rule.
Since June, 10 children have requested the exemption, including Sarah, who received two lung transplants because one failed. One other child received a transplant from the adolescent waiting list registrations.
Three children received transplants from the original waiting list registration and four were still waiting as of early December, according to the United Network for Organ Sharing, or UNOS.
One child who requested an exemption died while waiting, records showed.
As of Monday, 1,614 people in the U.S. were on the lung transplant waiting list, including 22 aged 10 and younger and 38 aged 11 to 17.
The UNOS pediatric lung transplant committee has voted in favor of making the exception permanent, a spokeswoman said. The group will present a policy statement for public comment this spring, with a final vote by the OPTN board set for June.
There was no word on the donor who provided Javier's new lungs, but the boy's mother expressed her appreciation.
"We are deeply grateful to the donor, the donor family and the wonderful doctors and staff at CHOP," she said. "We offer our sincere thanks to those who helped us and supported us and prayed for us. Happy New Year!."
JoNel Aleccia is a senior health writer for NBC News. Reach her on Twitter at @JoNel_Aleccia or send her an email.