Tuesday, Sept. 6, 2011 | 2 a.m.
Despite many odds stacked against him, 2-year-old Manny Solis is alive.
Manny was born with drugs in his system. He was taken from his mother as a newborn and moved to a Las Vegas foster home. Still, his toughest obstacles were ahead of him.
Cranky and always crying when she visited him, his aunt Cynthia Solis thought the young boy just wasn’t adjusting to his foster mother and living with other special-needs foster children. She was wrong.
At 2 months old, Manny was diagnosed with Denys-Drash syndrome, a rare genetic disorder that leads to renal failure in the first three years of life. His deteriorating kidneys had to be removed. He stopped growing. Learning to walk was out of the question as Manny was imprisoned in his crib, enduring 10 to 15 hours of dialysis a day to survive.
His aunt knew that no one was willing to adopt him and feared the state would move him to a long-term facility in Arizona.
“I started going to see Manny ... No one had an interest in him, but I couldn’t let him go to Arizona,” Solis said.
Her love for the boy would prompt her not only to adopt him, but to give him the gift of life: one of her kidneys.
In April 2009, she and her longtime boyfriend took custody of Manny so he could receive the care he needed while waiting for a kidney transplant, which is especially hard in Las Vegas.
University Medical Center’s Transplant Center, the state’s only transplant hospital, is not approved by the Centers for Medicare and Medicaid Services to offer transplant surgeries to children under 10 years old.
Dr. John Ham, medical director of the UMC transplant program, said the center can’t accommodate smaller children. He added that UMC hasn’t sought approval for pediatric transplants because the procedures are rare and would be performed infrequently.
“We need a different support structure in place and a team ready to take care of them,” Ham said. (In recent years, its adult transplant program has struggled and at one point almost lost its funding after a patient died.)
Nevada Donor Network spokeswoman Alyson McCarthy said Manny was on the national list for more than a year along with 88,000 people waiting for a lifesaving kidney.
After the boy was bumped off the list several times, Solis went to his doctors to explore whether she might be a match. In the world of organ donation, familial donors are an absolute last resort, but Solis — and Manny — were desperate.
A grant from the Nevada Donor Assistance Program allowed the family travel to Stanford Medical Center in California in May for tests, and Solis learned soon after she was a match. Giving Manny an organ was the only logical decision, she said.
“I really didn’t think about it. He needed it,” said Solis. “You’ll do anything for your kids, and it didn’t matter where we had to go.”
Although surgery wasn’t the best outcome, Manny was running out of time.
“Most doctors don’t want children to get a living donation from an adult,” McCarthy said. “The life of the adult kidney isn’t the same as the life of the child, who may have to be wait-listed later in life.”
Manny was using his final backup plan, a family member, but it would mean he would live. The two underwent surgery in June.
Solis says Manny is doing great.
Good news has kept coming for the young family: In the days before the transplant surgery, Manny’s adoption was finalized. The young boy, who had struggled so much, was officially her son.
“He’s doing so well,” Solis said. “He goes all day pulling on the furniture trying to stand up. He’s so much more full of energy.”
The surgery was tough on Solis, who is a stay-at-home mom to Manny and to her 15-year-old daughter. Manny still sees doctors at UMC weekly.
“It does take a lot of your time monitoring,” said Solis, who doesn’t complain about the sacrifices she has made for Manny. “It was something that needed to be done.”
His next step is to get leg braces to straighten his fragile bones, but with a new kidney and a new family, Solis says Manny is a happy and healthy little boy.