CHRISSY RIVERA Philly Daily News
Posted: Wednesday, July 29, 2015, 12:16 AM
TODAY, I WILL NOT need to stop at the cemetery to visit the grave of my little girl. Nor will I have to escort her to dialysis appointments, emotionally draining visits to the ER, or endure any long hospital stays. It was not long ago, however, when I feared those excursions would become a routine and I was terrified I’d eventually be spending a good deal of my time grieving for my daughter in a cemetery. But today, instead of walking into a quiet, lifeless house after work, I will enter a home full of love and be greeted by my precious child who was never supposed to live.
My daughter, Amelia, was diagnosed at 3 days old with Wolf-Hirshhorn syndrome, a rare genetic disorder. Almost three years later, Amelia was denied a lifesaving kidney transplant – even though I was donating my kidney – because of her intellectual disability. Incredibly, I was told she was “mentally retarded” and therefore not a suitable candidate for such a sensitive piece of surgery. I was outraged at this decision. Apparently, so were a good number of Americans, for the firestorm of bad publicity forced hospital administrators to re-examine their cold-hearted decision. The review resulted in an apology and approval of the surgery.
Amelia, now 7, is doing amazingly. She has more energy, has become more vocal, and is more a part of her surroundings and society. The surgical procedure literally gave her a new lease on life.
Just a few weeks ago, I celebrated Amelia’s preschool graduation with teachers and therapists who have believed in her potential to hurdle obstacles and scale walls that were always in her way. And although Amelia is much older than the average preschool graduate, her accomplishments – despite impediments that far exceed the average child’s challenges – were significant.
How many preschoolers can brag about defeating a death sentence? How many have been told they’re not valuable enough to warrant what most others routinely receive? She and I, and all those who supported us over the years, have a right to crow. There were many important people and institutions aligned against us. It hasn’t been easy, but we persevered and proved triumphant.
Good people came to our assistance; some offering moral support, others with more concrete contributions. All were supportive of proposals that would ensure the lives of children like Amelia would no longer be at the whim and mercy of heartless hospital personnel who acted more like business accountants than physicians sworn to preserve life.
One of them was New Jersey State Sen. Steve Sweeney who introduced legislation that precluded hospitals from rejecting children with physical and intellectual maladies for transplant surgery. The bill passed quickly with bipartisan support thereby making the Garden State the second state in the nation after California to adopt such legislation.
Not so fortunate, however, are those families across the river in Pennsylvania that still lack such protection. Pennsylvania State Sen. John Sabatina Jr. introduced a similar piece of legislation, but lawmakers in the Keystone State have seen no urgency in passing House Bill 585. Also known as Paul’s Law for a Pottsville resident who suffers intellectual disabilities and was refused a much needed transplant, Sen. Sabatina continues to work with groups like ARC, the Disabilities Rights Network and the Autistic Self-Advocacy Network to promote the bill, but even with bipartisan support lawmakers have given it a cold shoulder. They refuse to even schedule a hearing on the bill.
There was a time not long ago that children with intellectual and physical infirmities were consigned to appalling state asylums and warehoused like animals. Some were even used as raw material for experimentation by doctors who believed such children were a burden on taxpayers and could repay their debt to society by advancing science as cheap and availing test subjects. As pointed out in the 2013 publication, Against Their Will, some of the nation’s leading doctors and hospitals used institutionalized children as so many lab rats for medical research.
Fortunately, that ugly practice has ended, but children with mental and physical disabilities are still devalued and denied a fair shake by people in the medical profession. Sen. Sabatina and the 55 co-sponsors of HB 585 understand the need and value of a law that would let programs deny transplants to people with disabilities only if the disabilities are medically significant to the procedure.
My daughter Amelia is a beautiful testament to the marriage of goodwill and good science in preserving life. New Jersey understands that. I would hope Pennsylvania does, too.
Read more at http://www.philly.com/philly/opinion/20150729_Letters__Disabled___denied_organ_transplant.html#SX3xsQxcQAt1o8RB.99
