Thursday, June 19, 2014

Second Class Citizen

Over Easter break, our travels found me making friends with a hotel employee whose brother shared Porter's extra chromosome. While we bonded over stories, one of her stories really stuck with me.
When her brother was around Porter's age, as he was exploring and navigating his home, he opened a door that no one expected he would open. Inside that room, his mother had been stripping and re-sealing their hardwood floors. He ingested some of the floor stripper. When they took him to the hospital, the doctor refused to treat him, because of his extra chromosome. What difference would it make, the doctor told them? He's already "retarded"...what good would we do?
I often thank my lucky starts that Porter is here and now. He's not treated like a second class citizen by the medical community. In fact, while getting a little philosophical with his allergist a few weeks ago, the allergist said something to the effect of- "What everyone wants is to be happy. He finds the happiness everyone seeks in his every day life." And it's the truth. We've built up a team who is helping Porter grow, learn and thrive. We're really lucky. 
But I'm lying to myself if I really believe society has accepted that people with Down syndrome are not really a lesser level of human. Because this week, a precious baby girl gained her angel wings. Her extra chromosome disqualified her from being placed on the National Heart Transplant list.  If you'd like to learn more about Baby Annie and her Golden Heart, you can read her obituary or check her Facebook page. For the second time in two weeks, my heart is breaking for the Down syndrome community.
What can you do? Please sign the petition on to request that people with Down syndrome become eligible for organ transplant.  Make sure that you check the "organ donor" box next time you renew your driver's license. One organ donor can save eight lives. But right now, no organ donor can save a person with Down syndrome, despite the fact that the life expectancy of a person with Down syndrome has increased to 60 in recent years. Please help give everyone the chance to live a long and healthy life. Thank you!

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