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I rarely get “political” on this blog, though we all know I am DEFINITELY not, nor do I care about being, “politically correct”. My faith in Christ is no secret and while I don’t run around beating people over the head with it, I hope I live and write in such a way that it is obvious where my hope lies and by Whose standards I measure my choices and beliefs.
This afternoon my heart is heavy and I find myself swinging between crushing sadness and disbelief to outright anger. I take for granted, most days, the relative good health of our family. We certainly have our challenges in the health arena, but nothing that has prevented us from finding or providing the care our children need, when it’s called for. I also take for granted that “the powers that be” who have been given the great gift of skill and talent to heal and the responsibility for that care, for the most part, recognize that it IS a gift; and that their responsibility and calling is limited to providing the best possible health treatment available to them, NOT determining who is valuable enough to receive it. That we have devolved, in the United States of America, to a level that such an attitude is not immediately crushed out of existence is appalling. People are not God. No mere person has the right to decide whose life has enough value to continue.
This story came to my attention this morning, as I read a fellow blogger’s post and I am compelled to share it, because it is an issue that is bigger than any of us and that any one of us could face, in the future, should we allow it to go unchallenged. Today, in Philadelphia, (the City of Brotherly Love), a young girl lies in need of a kidney transplant. By the grace of God a matching donor is available and ready for surgery, immediately. The girl’s name is Amelia and the donor is a member of her own family. That’s correct. This family is not asking to remove an organ from the donor list. They are supplying one, themselves. All that is needed is a team to conduct the surgery and a place for it to happen and for her to recover. Children’s Hospital of Philadelphia has the means to provide both, but in their great wisdom, has determined that Amelia’s “quality of life” does not meet their standard of valuable enough to live, because Amelia is cognitively impaired. A person they deem to be “mentally retarded” is not entitled to the life-sustaining care that others can expect at CHOP, because they have a “lesser quality of life”. By what power or authority do they believe they are allowed to determine such a thing? Outrageous!
What is a “lesser quality of life”? I have family members who suffer from both Type 1 and Type 2 Diabetes. It has literally ravaged both sides of my family for decades. Theirs would not be considered a “normal” life by medical standards. Do they deserve to live? My youngest sister has multiple sclerosis and spends most of her life immobile, needing help with almost every function of life we so blindly take for granted. Her life would likely not meet the heartless and ruthless standards of “quality”, established by this “institution of healing”, yet I can tell you emphatically that her life has value beyond what those of us without “diminished capacity” will likely ever understand. There are people in my family and in my church who have suffered from illnesses that have left them developmentally disabled, unable to walk for a time and unable to feed themselves without assistance. Do they deserve to live? There are those in this nation who live well below the poverty level, who struggle to see that their family receives even one meal a day. They don’t have homes to go to. What is their “quality of life”? Quality of life is not determined by an arbitrary list of man-made physical circumstances or standards! Where would we draw the line? Would you and your family be safe tomorrow? “Quality of life” is determined by the One who gave it, who lovingly created it and has purpose for each one. In our arrogant, close-minded and superficial way of thinking, we cannot even begin to grasp the joy and happiness that sweet Amelia brings to the world, what she teaches those around her or the happiness that those people bring to her. Her “purpose” doesn’t fit into the neat little man-created package of what has value. Oh, if only we could see Amelia and her value through the eyes of the Magnificent One who created her! What we would understand and see then, would drive us to our knees. At least I hope it would. I pray it will.
What can you do? Add your name to this petition to Children’s Hospital of Philadelphia, asking them to provide the surgery that Amelia needs to receive her family member’s kidney. Pray for her and her family and those who have decision-making power in this situation. Read her mother’s story, and stop for one moment to think of the people you know, the people you love and if they will someday meet man’s arbitrary standard of “quality of life”. Who will speak for THEM?
Great read, some very saddening. I wouldn’t live in that city for nothing. Gezzz that makes me mad as all get out…
It certainly is scary to contemplate. Please take the time to add your name to the petition at http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive to help this family. Thanks!
I would be very apprehensive about letting these people touch my child after all this! I would most definitely take her somewhere else! I would have absolutely NO trust in any of them or the “job” they would do!
[...] Love That Max, Just Juniors, Not Dead Yet, Kidneyandeyes, A Little Something for Me, Busy at Home and Examiner.com for additional [...]
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Well that is just awful. I cannot believe someone would think like that.
Thank you, Ellen, for stopping by and sharing this post!
I added my name to the petition. I am glad that you have faith and have been able to take medical care for your family for granted in the US–I used to. The truth here in America is that many, many of us do not have access to medical care that we can rely on–not even for far cheaper, more routine, less dramatic “quality of life” issues.
Mary Beth, it is a sad situation for everyone when the costs for healthcare make it unavailable to those who need it most. And when finances are not even the issue, but the arbitrary decision of outsiders with no connection to the patient, left to determine their life’s value and their right to “be”, it is downright terrifying. I appreciate you stopping by and sharing your concerns.
Hi, my name is Debi and I am 60 years old. Last May I donated a kidney to my 47 year old sister. (We both are doing great!) She has been diabetic since the age of 5 – needing 2 shots a day. She was in a very bad state, to say the least. She did not need to ask, I immediately started the tests for compatibility. Her quality of life was in a sad state and I would find it reprehensible if ANY question had come up about whether the transplant should or should not have taken place. The surgery took place at NC Baptist Hospital and the personnel could not have been more caring and professional. I find the above story sickening and the word needs to get out. Thank you for sharing.
Debi, thank you so much for sharing your story and your experience with NC Baptist. I appreciate you taking an interest in sharing this story!
Wow Glenda, I had not heard of this-this is absolutely appalling, especially for a Children’s Hospital! Thank you for bringing this to my attention, and I have signed the petition!
Thanks, Julie!
Who will speak for Amelia? Stand back because I’m about to shout from the roof tops. Their “quality of life” is diminished because they judge others. This sickens me! I will say a prayer for Amelia and her family tonight and I will send every sparkle I have. Oh yea, and I seriously am about to shout from the roof tops!
It just breaks your heart, doesn’t it? I’m with you, Christy, I wanted to shout about it, too. I settled for posting about it and I hope it creates even a small ripple of an outcry for this precious family and their little girl.
So sad. Things like this are happening every day… most people just don’t hear about them. My children and have a metabolic condition so they can’t eat regular food. They must take medical food and formula for life… but it keeps them healthy, alive and active members of society. Insurance & health care wants to deny their needs. We fight every year, so my heart goes out to this family. Publicity is sometimes the best tool we have. Hopefully the hospital will change its mind and a doctor will donate their services to make this happen. There are still good people out there.
Andrea, I can’t imagine how hard that struggle is for you or how frustrating. I appreciate you stopping by to share your experience and I agree that publicity may be the answer. Not as many people as you would expect know about these problems. And yes, there are tons of awesome people out there who go above and beyond everyday to share with others. I’m praying that someone with the necessary skill will step forward for Amelia.
I signed the petition. This is so wrong.
I’m not sure my first comment went through – I signed the petition and tweeted it out. This is so wrong. I can’t imagine how her mother must feel.