The director of the orphanage again said, "no quality of life" and on her 4th or 5th birthday, that baby would be moved out of her baby home and sent to an institution. It would be dark, and cold, and dirty. She would not receive medical care or much food or water. She would be left tied to her bed, not allowed to run outside, like most 5 year olds love to do. There... in that institution... she would then truly have had no "quality of life".
Thankfully, God spoke to our hearts and told us, "Go get your baby. She needs you." And two years ago, we did just that. But there are small children in other countries all over the world who are suffering the fate of an institution, just because they have a physical or mental handicap. They are robbing these children of their "quality of life".
Then there's Amelia Rivera. She has Wolf-Hirschhorn Syndrome. If she doesn't get a kidney transplant, she will die. Plain and simple. But unlike all the children I spoke of earlier, Amelia lives here, in the United States. She lives in a country where children with disabilities thrive. The most diverse country in the world. You see handicapped parking spots at every store. Almost every school has accommodations for children with Special Needs. There are programs and developmental doctors and therapies to help them thrive in every area of their lives. How lucky for Amelia that she was born here! Right?
You see, Amelia's doctor at the Children's Hospital of Philadelphia, has decided that Amelia Rivera does not qualify for a kidney transplant. This is not because she's too sick and wouldn't survive - she would. This is not because she doesn't have health insurance - she does. Her doctor's reason for denying Amelia this life saving surgery is because HE believes that Amelia has "no quality of life".
Imagine how her parents felt, sitting in a room at the hospital hearing a doctor tell them that their daughter shouldn't be alive. She's not worthy of "saving". She's better off dead.
And when her parents said they would fight for their child, they said, "I have been warned about you. About how involved you and your family are with Amelia."
Warned. About parents who are TOO involved with their child. Warned about parents who want their little girl to live. Warned about parents who want the same medical care for their child as any other child in the United States.
Shame. On. Him.
When doctors get to decide whether or not a child is "worth" a donated organ, when they can look a parent in the face and tell them to just let her die, we are NO better than Ukraine or Russia or Serbia or any of the other countries who lock children with SN away and let them die. Children's Hospital of Philadelphia should not be able to get away with this, and this is my plea to help the Rivera family in the only way I know how.
There is a petition here that hundreds of parents have signed already. Will you please go sign and let CHOP know this is NOT ok? Will you go to CHOP's Facebook page, and let them know again that this is NOT ok. Ironically, their motto is "Hope Lives Here" apparently only if you're a typically developing child... who will have "quality of life". Let's be loud. Let's stand together for Amelia, and for all children in this country with special needs. And let CHOP know how much quality our kids really have.
God bless you, Rivera family. Thank you for being amazing advocates for your daughter! I hope she has many, many more years here on this earth.