Monday, March 2, 2015

Help to End the Term "Incompatible with Life"



This was sent to my nonprofit address, but it is worth the effort of you participating if you are able - if nothing more, please check out the effort and share with others!! This mission is aimed at the government in Ireland, but this concern is not one that only the population in Ireland is facing... #beeAWARE



"Urgent: Here is how YOU as a medical practitioner can help end the term 'incompatible with life' and protect babies with terminal illnesses

Dear Partner, 

I hope this email finds you well. My name is Tracy Harkin and I am a mother to a little girl with Trisomy 13. Along with other Irish mothers involved with our support network Every Life Counts (www.everylifecounts.ie) I am very concerned by the  attempts being made by the Irish Government to legalise abortion for babies with conditions such as ours. Our babies are being described in the most horrific way, and are being labeled "incompatible with life" which is a medically meaningless and insulting term, designed specifically to justify abortion for our babies with life limiting diagnoses. 

Together with medical professionals and legislators we are going to the United Nations in Geneva on March 11th where there will be a meeting of the United Nations Committee on the Rights of Persons with Disabilities. There, we will be calling for an end to the use of the term "incompatible with life" when describing unborn children with life limiting diagnoses. More information on that event can be found here: http://www.everylifecounts.ie/achieving-excellence-in-perinatal-care/

At this event we will launch the Geneva Declaration on Perinatal Care which correctly asserts that the term "incompatible with life" is not a medical diagnosis and should be used when describing unborn children with a terminal illness or severe disability. The Declaration also calls for the development of Perinatal Hospice services to care for these babies and their families before, during and after birth. Full text of the Geneva Declaration can be found at www.genevaperinatalcare.com

We at Every Life Counts invite all medical practitioners worldwide to sign this important declaration and make a real difference to the lives of babies with a life limiting diagnosis. It is imperative that this initiative has the support of the global medical community as we campaign for the care and protection of our sickest children and oppose moves to legalise abortion for these babies. 

Please sign the Geneva Declaration today, 

Kind Regards

Tracy Harkin 
Every Life Counts
www.everylifecounts.ie

Tuesday, February 24, 2015

Happy Ruckusmaker Day!

About to be celebrated all over the world for the first time, is annual Ruckusmaker Day.

From Seth Godin's, who I absolutely adore to follow for marketing and leadership guidance: 


"Tomorrow would have been Steve Jobs' 60th birthday. Steve's contribution wasn't invention. Technology breakthroughs didn't came out of his workbench the way they did from Land or Tesla. Instead, his contribution was to have a point of view. To see something and say 'yes' or 'no'. To not only have a point of view, but to change it when the times demanded. 

Most of all, to express that point of view, to act on it, to live with it.

There's a lot to admire about the common-sense advice, "If you don't have anything worth saying, don't say anything."

On the other hand, one reason we often find ourselves with nothing much to say is that we've already decided that it's safer and easier to say nothing.

If you've fallen into that trap, then committing to having a point of view and scheduling a time and place to say something is almost certainly going to improve your thinking, your attitude and your trajectory.

A daily blog is one way to achieve this. Not spouting an opinion or retweeting the click of the day. Instead, outlining what you believe and explaining why.

Commit to articulating your point of view on one relevant issue, one news story, one personnel issue. Every day. Online or off, doesn't matter. Share your taste and your perspective with someone who needs to hear it.

Speak up. Not just tomorrow, but every day.

A worthwhile habit."
What exactly does this have to do with OUR mission? The answer is - EVERYTHING!

Please continue to learn all that you can about hydranencephaly and the families that we represent through our efforts. These children continue to be given a diagnosis that is deemed "incompatible with life" which we know to be more often UNTRUE than true! If you're on any stage of the journey with a child given this diagnosis - or with a similarly presenting diagnosis (which I encourage you to contact me to chat more about) - please share that journey. The misconceptions are beginning to fade away and the hope is taking a stronghold in the medical community for these children.
RAISE A RUCKUS - SPEAK UP! DO NOT LET "PROFESSIONALS" BULLY YOU IN TO GIVING UP ON YOUR CHILD!

In fact, be BOLD:

Seth Godin: Keep Making a Ruckus from 99U on Vimeo.

BUZZ: Happy Heavenly Bee-Day


Monday, February 23, 2015

Meet the Bees

Need some help?

Head on over to our Facebook page and check out our photo albums... in case you still believe that hydranencephaly is a condition that should be deemed "incompatible with life" - I'm sure you'll start to believe otherwise!

Or find us on Instagram!


If you would like to see your bee featured on "Meet the Bees" or in a "Bee-ography" some Monday at Global Hydranencephaly Foundation - email me at President@HydranencephalyFoundation.org for more information!

Friday, February 20, 2015

Fact Buzz Friday

Statistics will tell you that hydranencephaly has an occurrence rate of 1 in 10,000 births worldwide, or 1 in 250,000 births in the United States alone (Kurtz, 1999). 

What statistics will not tell you about are the countless babies who were given up on far too soon, with encouragement from the medical professionals. Statistics also will not tell you about the countless others that are unknown due to misdiagnosis, lack of diagnosis, or just simple oversight without a cause of death to be determined.

Statistics are important to the medical community. 

They're not important to our community, except that without them - we cannot gain ground in the world of awareness in successfully changing the medically subjected misconceptions that surround this diagnosis; nor can we ensure that every child given this diagnosis is given the opportunity to live the quality of life they deserve, without the stigma attached that their condition is "incompatible with life." 

Incompatible with Life? Not often. 

The following video is not about hydranencephaly, but it does give you a raw glimpse in to the lives that our families live in the beginning after diagnosis: being told to terminate, expecting a baby to die and not being able to celebrate their life, planning a funeral instead of a baby shower, counting final breaths, etc. 



This fact buzz Friday message is simply this:

Please do not let a diagnosis dictate the quality of life an individual will have. Do not let a diagnosis guide the level of medical care that an individual will receive. Do not let a diagnosis fool you in to believing that there are any amount of impossibilities that travel along with it. Do remember that each life is a unique one, not to be compared to all others. Do remember that each little life, regardless of how little in quantity, will be great in quality. Do remember to "Believe in the Impossible!"