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From
USA Today:
Five-year-old Amelia Rivera (picture) is thriving and growing, three months after getting a new kidney from her mother, Chrissy.
"She's
more active; she moves around more, she's more vocal," says Chrissy
Rivera, a 38-year-old high school English teacher from Stratford, N.J.
Husband Joe, a 41-year-old real estate agent, says: "She's getting bigger, she's getting stronger, she's more alert."
But
the Riveras say they shudder to think what might have happened to their
little girl by now if they had accepted the verdict of a doctor they
met with in early 2012. They say that doctor, from a leading children's
hospital, told them that even though Amelia's kidneys were failing, she
was a bad candidate for a transplant – because she was "mentally
retarded."
Amelia, who has a rare genetic condition called
Wolf-Hirschhorn syndrome, does have intellectual disabilities, along
with various physical problems. But the Riveras found it shocking and
unacceptable that her mental capacity could determine whether she lived
or died.
So Chrissy did something that turned Amelia's case into a
cause: She went to a website usually seen only by others in the small
Wolf-Hirschhorn community and wrote about that encounter at
Children's Hospital of Philadelphia (CHOP). "I expected it to be seen
by 10 or 20 people," Chrissy says. Instead, it went viral and inspired
some 50,000 people to sign a petition at Change.org, demanding that the
hospital allow the transplant. Newspaper stories and blog posts were
written. Medical ethicists weighed in — and generally agreed that
although transplant centers had to consider patients' overall health and
ability to thrive, it wasn't right for anyone to be denied just because
they had a mental handicap.
Within days, Chrissy says, several
members of the Philadelphia hospital's ethics committee were in her
living room. A few weeks later, the family and the hospital released a
joint statement saying a transplant was under discussion. Hospital
officials apologized for what had happened, while saying it was never
their policy to deny transplants on the basis of intellectual ability.
Later,
the family announced that Chrissy had qualified as Amelia's donor. The
surgery was done July 3. The Riveras say they are very happy with the
care Amelia has received. The family declined to discuss how the
surgery was paid for.
In a statement Friday, the hospital said:
"We appreciate the role the Riveras have played in helping us recognize
opportunities for improvement and believe we are a better institution as
a result. We look forward to providing Amelia and her family the very
best of care long into the future."
But that happy ending does not mean that the fight Amelia inspired is over.
In
the months since Amelia's story became public, Chrissy says, "a lot of
people have reached out to us personally to share similar stories, to
tell us heartbreaking stories of how their loved ones were denied simple
medical care, dental care, eye glasses — because medical professionals
felt that this person's quality of life wasn't good enough to get this
care."
They say even before the transplant fight they often had to
demand such basic care for Amelia. So they want to speak up now for
others facing those barriers.
In that spirit, Chrissy Rivera
recently went to New York City to speak at a dinner hosted by Special
Olympics at the annual meeting of the Clinton Global Initiative.
"I don't have a concrete solution to change the stigma that exists in the medical community," she told that gathering.
According
to a 2009 report from the federal Centers for Disease Control and
Prevention, the health of people with intellectual disabilities has not
been adequately studied, but existing research suggests they do get
poorer health care and have poorer health than the rest of the
population. Research compiled by Special Olympics suggests that the
unwillingness of some doctors to treat people with such disabilities
continues to play a role in the gap.
But Amelia's story already is making a difference, says Tim Shriver, chairman of the board and CEO of Special Olympics.
"It
has awakened people who didn't see the issue before," he says. Her name
has come up, he says, in meetings he's attended with medical leaders
and government officials who want to address the problem. The gap exists
partly because of a lack of training for medical professionals but also
because of "old fashioned ignorance and stigma," he says.
"Chrissy is a hero," he says, for speaking up for her daughter and for others.
How
long Amelia will continue to thrive is uncertain. She goes to a clinic
once a week for a checkup and shows no sign of rejecting her new kidney —
though her parents understand that it likely will fail some day. They
have been told a typical transplanted kidney lasts 12 years. Luckily,
they say, Joe also is a match for her. But Amelia does have other
medical issues: She is not able to eat on her own, so she gets
nourishment through a tube in her stomach; she also needs to take
medications to prevent seizures and treat asthma. She is more vulnerable
to infections than most people.
The
life expectancy for people with Wolf-Hirschhorn syndrome today is
unknown, but it is known that some individuals with the syndrome survive
into their 30s, 40s and beyond, says the National Institute of Health's
Office of Rare Diseases Research.
For
now, Amelia's parents are focused on raising a little girl. Amelia is
not yet healthy enough to go to school, but she works with a teacher and
therapists at home. She enjoys bedtime stories from her two brothers,
her parents say. She does not walk, but gets around a bit by rolling on
the floor. She does not speak, but does communicate, Chrissy says: "She
definitely lets us know when she is happy or unhappy."
Some
children with Amelia's syndrome do eventually learn to walk and talk,
but what developmental progress Amelia makes, on what timetable, is not a
big worry, Chrissy says: "Amelia is going to write her own book; she is
going to meet her own milestones when she is ready."
