THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Monday, September 13, 2010

My Turn With The Worms - Embryonic Stem Cell Research

Last week the blog circuit of D Mamas that I keep up with touched on Embryonic Stem Cell Research (ESCR).  When you're raising a child with diabetes, this is a subject that is hard to ignore....because, the truth is, there are labs using this research to advance a cure and organizations close to our hearts who are helping to fund it.

You can peruse Heather's post HERE.  And Jen's post HERE.


I realize this is touchy.  


But who am I to avoid "touchy"????  I like to dive into "touchy" subject matters!!!!  

Some people are morally opposed.  Others are strong advocates.

As a Christian/D Mama/T1D Advocate/Blogger, where do I stand?

To be honest, this isn't the first time I've been posed this question.  From time to time over the past 2 years, I have received a few private e-mails from fellow D Mamas asking me to reconcile my endorsement of the Juvenile Diabetes Research Foundation and my position as a Christian who supports an organization that provides funding for ESCR.
 
Before I get to the nitty gritty of my post, there's a few things I'd like to explain.

1)     The JDRF is an advocacy organization that supports a mission very close to my heart.  Without the efforts of JDRF, children under the age of 8 probably would not have access to insulin pumps.  (Sugar began pumping when she was THREE!!!).  Chances are REALLY good that NO ONE would have access to a Continuous Glucose Monitor (CGM) covered by insurance.  The Special Diabetes Program funding would probably have already been chopped off the block, and the Artificial Pancreas Project would never become a reality.

2)     I have never knowingly donated money raised by our family for JDRF to programs that support ESCR.  As a donor to this organization, I/you/we have the ability to earmark where the money goes....and where it doesn't. 

3)     I think everyone has a right to their own opinion.  If you're morally opposed, I believe you reserve the right to your position.  If you are an advocate, I believe the same.  At the same time, however, I do not believe that this, or any other hot topic, should create a divide.  At the end of the day, we are all united.  We want a cure for Type 1 Diabetes.  I believe that we can disagree and still love each other unconditionally.

4)     In the past 6-8 months or so, I have learned that I do not have to be chained by this disease.  Yes, it remains overwhelming.  Yes, I have moments of despair when it feels like I'm not being the pancreas Sugar needs me to be.  Yes, I oscillate between ups and downs emotionally, much like the rollercoaster reality of blood sugars.  But my heart knows it has already been rescued.  As a follower of Jesus Christ, I take comfort knowing that He can handle the things I cannot.  I can let it go. I can lay all of it at the cross and proceed with confidence.

5)     I also believe that each of us may have a different definition of what a cure is.

For the record, my definition of a cure for Type 1 Diabetes looks like this:

No more finger pricks.  No more carb counting.  No more brain boggling over insulin.  No more highs.  No more lows.  No more "pancreatic thinking".  Sugar will be able to eat/drink something --> there's insulin automatically available to convert glucose into energy --> she moves on with life, never giving her pancreas a second thought.

During this process, none of her other organs are harmed.  She doesn't develop another battle (such as cancer or some other horrible, terrible outcome) to fight.  She does not have to take medications with harmful/uncomfortable side effects in order to maintain her quality of life.  Sugar simply lives.  Healthy, happy, and carefree with insulin/glucagon production to regulate her blood glucose automatically in order to prevent the harmful consequences of uncontrolled blood sugars.

My friends, my concern over a cure -- regardless of which research results in such -- goes far deeper than the lab it is created in.

I'm concerned about the complications unknown.  I'm concerned about the long term effects of medications.  I'm concerned about what the effects are if the autoimmune response is triggered for a second time, causing a relapse of Type 1 Diabetes to occur. 

I'm concerned about rushing out to sign Sugar up for her cure without a hefty amount of long term evidence to support that, indeed, her quality of life will be enhanced instead of potentially making it harder.  As I mentioned in Jen's comments, I have a hard time believing that, one day, this veil of uncertainty will be lifted and the grass will automatically be greener on the other side.

I mean the grass is ALWAYS greener, right?

Not.


It is my position that God is in control.

Heather quoted me in her post...

"In all things, I must constantly remind myself that I am an ambassador for Christ. Christ cared less about authority and more about people.  The hurting, broken, fallible people.  I care about these families and I trust that God is in control.  In the end, it doesn't matter how much money the JDRF raises...a cure will only come in God's timing, using God's authority.  It all belongs to him anyway."


Matthew 19:26  "With man this is impossible, but with God all things are possible."

This is the Bible verse our family walk team uses to inspire our journey in support of the JDRF.

I believe the Bible to be true, and I strive to live by it's teachings.  I believe that, if the Word of God says that the impossible is only made possible with God, then that's all there is to it. 

I have prayed for a cure.  MANY mothers have.  Many fathers.  And other loved ones.  And strangers too.  If a cure is revealed, I believe it will only have been made possible with God's provision.

What if that cure arises from ESCR?

Once there is a substantial amount of evidence to support that the long term risks and complications would not make Sugar's life harder.....

Well....

I believe that God answers prayer.  And, sometimes, answers to prayers are revealed in ways you might never expect.  I do NOT believe a healthy, lifelong cure is possible without His hand.  If Sugar's cure is found, I believe it will only be possible because He provided the knowledge, wisdom, and ability to make it happen.

Until then, I will continue to advocate for improved technology.  Improved quality of life.  Improved insulins.  Improved health care coverage.  Improved access to supplies.  Improved support networks.  Improved education.  Improved legislation.  Improved everything as it relates to Type 1 Diabetes.

I will continue to support the JDRF, because they support all of these efforts.

God is in control of both the journey and the cure.

I am in control of how I respond.
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17 comments:

  1. Hi Wendy,

    As a Christian, I have struggled with this issue also. And I'm not writing to try to change your mind or anyone elses, but just to write some thoughts on it.

    You wrote "If Sugar's cure is found, I believe it will only be possible because He provided the knowledge, wisdom, and ability to make it happen."

    I think the same could have bee said in the story of Joseph in the Bible, where men meant it (Josephs betrayal) for evil but God meant it for good. Yes, God made a bad situation good. But does that mean He would condone or ask Christians to condone the behaviour of the brothers? Would we have said "Yes, betray your brother, break your fathers heart, because some good can come from it in the end?

    What if, after all those babies are killed, a cure comes from all the non embryonic research that has been/is being done.

    What if a cure is found through all the embryos killed, is our children's life more important then the lives killed to find the cure? Could we accept that cost? Would God honor that or mourn?

    These are the questions that go through my head. I hope I'm not coming across argumentative because I'm not arguing, but I don't have many I can talk these concerns over with, so I would love to hear your thoughts on it also.
    Mary

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  2. Well I think God creates all situations so that we can learn from them...and move on. Whether it be the situation Mary describes above with Joseph, wars that we struggle with here in current day, or Stem Cells. I don't think he means for us to be "trying" to always be "godly" in his eyes. I think we need to accept his love and see "God" in all aspects of our lives...and not try to assume how he wants us to live. I believe in goodness and trying to do the right thing according to my moral make-up and my heart.

    I don't hold a ton of faith for Stem Cell Research at this time...but if it comes to fruitition I will definitely research the long-term side effects of the "cure" and also I question the autoimmunity of it all...that has to be addressed to CURE type 1.

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  3. Beautiful, well-stated post, Wendy! I'm with Reyna, I'm not putting my hopes for a cure in the stem-cell basket. I do think stem cell research has the potential to provide some pretty great things for others, but for diabetes....well, it just wouldn't do any good to use those stem cells for beta cells if they're just going to be attacked by the t-cells again, right?

    Thanks for sharing this!

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  4. In response to Mary...
    First, let me say that I Do believe in God. I DO try my best to live as he would want me to(no, I am not perfect). I DO believe that there WILL NOT be a cure until God makes it possible.

    Now that I have cleared that up...
    I'm sorry, I DO NOT believe anyone is purposefully "killing off babies" to do research.
    I forget who said this, but would "throwing stem cells away"(in the garbage)be better?? Because that IS the alternative.

    Corinthians 6:19 is used to defend the idea that organs should not be harvested from a persons body... meaning my organs should die and be buried with me??
    OR... should I "love thy neighbors as myself"? Sacrifice my organs and demonstrate a love for God as well as for thy neighbors.

    Keep in mind that ANY ONE OF US / OUR CHILDREN could need an organ to save our / their life one day.

    I believe God is with you and will lead you down the path you are meant to go. I believe the Bible has a verse to support that path... it just all depends on how you "listen" to him!

    I know we all have our reasons for our beliefs. I agree that we are all entitled to them. And I believe we can all love eachother regardless of those opinions without judgement.

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  5. You never cease to amaze me! Your knowledge, your faith, your love for your girls...all is inspiring.

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  6. Bravo!!!

    Can you hear me clapping over here?

    I really appreciate your perspective. This is an eloquent, thorough, well-written post. Great job!

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  7. Hey Guys,

    Thanks for chiming in.

    Mary...I do appreciate your comments, and I don't feel you're being confrontational at all. I'm honored that you feel comfortable sharing your thoughts and blessed that your willing to be transparent with me.

    My first response is that I'm human. I have a weakness for wanting my child's burden to be alleviated. I can only hope and pray that God knows my heart.

    I believe to my core that a cure will not be possible without God's intervention.

    The Bible refers to being "knitted in your mother's womb" -- that's a far cry from a lab... Eve was conceived from Adam's rib -- not an embryo...The Bible includes several accounts involving the destruction of human life...

    And the questions continue. On and on and on...

    The only response I have to offer is, again, that I'm merely human. I believe God understands my moral compass, and I believe He knows that faith guides my journey.

    For me this comes down to a faith issue. Faith that God will provide. Faith that a cure can only be reached with His guidance. Faith that He knows my heart.

    I guess a human weaknesses is that we just don't have all the answers.

    But I have faith He does.

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  8. So very well written Wendy! There are a lot of questions, but all we really have is Faith. Like you said, "Faith that God will provide." Thank you so much for sharing.

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  9. Great post. I have to agree with Laura, I do not believe these embryos are being killed FOR stem cell research. To me its the same as donating your body to science.

    I believe in god, I am spirtual and I live up to a very HIGH ethical standard I have set for myself and my family.

    With that said ANY cure that comes about I would wait before letting Justice be apart of it, because with anything there can be worse side effects than the disease they are trying to cure. But I also will not turn my head away because its from stem cell.

    I know I may get shunned for saying this. I believe a cure is there. Has been. But this disease is a MULTI BILLION DOLLAR industry for these companies, how can they let all that go?

    It may sound synical but it's just my thoughts.

    Either way no judgement on anyone, I respect everyones opinions.

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  10. Amen, Wendy!

    I must say that I agree with Lora that babies are not being killed for research. Is it better to throw the embryos away? How is it different from donating a body to science?

    These are all questions that we must answer for ourselves and our children.

    I'm a Christian. I support JDRF. I support ESCR. And I KNOW that our little squabbles over wording or funding don't really matter because GOD is in control. He will reveal a cure if and when He is ready to do so. He knows our hearts. He knows what we can't express in words. He knows what it's like to see your child suffer.

    My trust is in HIM. I may support organizations or research (and you may find my beliefs hypocritical- but honestly, it's not between you and me -it's between GOD and me.) but my TRUST is in the Lord. Without Him, nothing is possible. With Him, everything is possible.

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  11. This is a tough topic Wendy, thank you for sharing your heart with us!

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  12. You know…you are right that EVERYONE has a right to their opinion whether they believe human embryonic stem cell research is morally right or wrong. Why should this cause such a divide? You got me. It doesn’t matter to the government if there are differing opinions…because the government is going to mandate that you PAY for the research whether you are morally opposed or not. You may think it is morally wrong but please don’t cause a fuss just because you have to pay for it too and it is against your religious practices. Why cause such a divide? You see, my god is better than your god…so you should pay for what my god says. I know. I am a Christian. I am imperfect. But I have faith. I know god. Quit complaining and quit the division.

    Yes, I agree with you too about the good coming from using for research all those “soon to be discarded” human embryos. And maybe one day we can even extend your thoughts to something greater for mankind. Maybe with god’s grace we can sacrifice excess children to help others live better lives. We don’t have to call them “children” because it is apparent some children are genetically not equal to normal children…and there are so many children in this world anyway…some just sitting useless in orphanages…so we can sacrifice their lives to save more important Christian children. We can call it Faith in god. Maybe god can provide a cure by even sacrificing your child’s life for science. Just like Dr. Mengele did with the Jews. Jewish children weren’t really people because they were a “lesser” form. There were so many Jews around anyway…too many of them… all overpopulated in those concentrations camps. We were going to discard them anyway…throw them in the biohazard crematories. Why not use them instead for the common good? Perhaps like this cause, Dr. Mengele had all the rights to research and sacrifice Jewish children for the benefit of science and to help other people. Maybe Dr. Mengele had a child with a medical problem too. Maybe he did those human experiments for all good reasoning…just like all of your good reasons. Why not sacrifice a few Jews and their children for the benefit of mankind?

    Oh yes, and why don’t we just call those embryos “a bunch of cells” instead of labeling embryos. It will make us all feel better. There is even a more important reason to call them cells too. You see if we do that then we can establish legal precedent and can say that women who initially conceive only have a “bunch of cells” …not really embryos. If they are not embryos…we can then dictate that some of these women must have abortions…especially women who have a predisposition to make imperfect children…Oh, I mean imperfect cells….because, you know, they really aren’t embryos…just cells. God knows that. Because god is going to find a cure from embryonic stem cells…you know? And that justifies EVERYTHING. Just like Dr. Mengele. Faith, sister. God will find a cure with all those embryos…Oh I mean cells. You will see.

    Felicity Facetious, your sister

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  13. Felicity Facetious,

    For some reason your comment went to my spam folder and I didn't find it until now.

    This is why I poured my thoughts out. I needed to hear this....I'm easily blinded by the idea of making it all go away -- but at what cost?

    When I read your take, I can see the passion behind why people are so incredibly opposed. Especially when it comes to government funding.

    You showed me an angle I've not encountered before. It causes pause. Really makes me think....

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  14. As an embryonic stem cell scientist and an injured worker, I would caution the public about the recent political movement to reverse the Dickey Amendment and, thereby, legalize federal funding for embryonic stem cell research. Matter a fact, the public should be alarmed.

    Why?

    Disregard for human rights issues, which rise up and above the “religious right” concerns, have already adversely impacted the public. And, unfortunately, more adversities toward the public are on their way as embryonic stem cell research advances. These critical issues deserve thoughtful attention before a reversal of the Dickey Amendment should be even considered.

    I should know.

    I was denied directed medical care for exposures from dangerous embryonic stem technologies incurred while at work. Unbelievably, I was denied under the premise that “trade secrets” supersede a worker’s right to specific exposure information.

    Really? Yes, really.

    Welcome to the embryonic stem cell world, a world of legal quagmire where human rights and public rights are slated toward the chopping block. Chop! Chop! One down for worker’s rights.

    Public Beware. If the embryonic stem community does not care about worker safety and worker rights, you had better believe they also do not care about public rights or public safety either.

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  15. Candy,

    Bioethics is a study of the philosophical and ethical controversies surrounding advances in biology and medicine. Embryonic stem cell research is a bioethical issue because it requires the use and destruction of human embryos. Some people feel that this is not right, not ethical. Some even feel it is not moral, that is, against their religious beliefs. Many people are ambivalent and have contradictory attitudes about if this is right or wrong. Others believe nothing is unethical or immoral about human embryonic stem cell research.

    See these links to further your discussion on bioethics, politics and science with embryonic stem cell research.

    http://watchdogonscience.blogspot.com/2010/09/bioethical-issues-on-human-embryonic.html
    http://watchdogonscience.blogspot.com/2010/09/bioethical-issues-on-human-embryonic_22.html
    http://watchdogonscience.blogspot.com/2010/09/bioethical-issues-on-human-embryonic_3603.html

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Candy Comment Love!

P.S. (Moderation has been enabled due to mega-spamming sugar cubes.)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.