Two interesting articles

I came across these two articles through my Google Alerts. They are so opposite of each other, it's amazing!

I like the bill that is being proposed in this first article:

Bill Would Change The Way Doctors Perform Abortions

Posted: Jan 23, 2009 10:12 AM

Updated: Jan 23, 2009 02:52 PM

By Megahn Snyder

A northeast Kansas lawmaker plans to introduce a bill Monday that would change the way doctors perform abortions.

Wade Hapgood, spokesperson for Kansas House Republican Caucus, says the bill is called the Woman's Right To Know And See Act. He says it would require doctors to show women sonograms and allow them to hear the fetus' heartbeats a half hour before an abortion.

Representative Lance Kinzer (R-Olathe) says he has nearly 40 cosponsors from across the state. Hapgood says the lawmaker is also working on getting support from democrats for the bill.

But, the second news article is sickening:

Obama reportedly will reverse abortion 'gag rule'

Posted by Foon Rhee, deputy national political editor January 23, 2009 10:58 AM

President Obama didn't do it symbolically on the anniversary Thursday of the Roe v. Wade decision legalizing abortion in the United States.

But he plans to sign an executive order today ending the ban on federal funds for international groups that promote or perform abortions, the Associated Press and others are reporting.

The expected move reverses the rule put in place by the Bush administration. Republican and Democratic presidents have been changing the rule like a ping-pong ball.

Abortion rights groups, which supported Obama during the campaign with money and volunteers, have been pushing for the change in the policy, which bars US taxpayer money from going to international family planning groups that either offer abortions or provide information, counseling, or referrals about abortion.

Qadoshyah

Abortion

I was at the babycenter.com Down syndrome forum and I happened to go over to the Terminations For Medical Reasons forum. Oh boy, what a sickening forum that is!

I was reading the messages posted on that forum and it makes me so mad! I sent a note to a couple mothers on there. Particularly one mother who is scheduled to have an abortion because her baby was diagnosed with Trisomy 21. I sent her a note in hopes that maybe, possibly, she would change her mind and not abort her baby. I also sent her the link to our book, in hopes that it would give her accurate information about Down syndrome.

As I was reading some of the messages, I was amazed at how many of these women aborted their pregnancies because of a T21 diagnosis. Most of the terminations I read about were because of Down syndrome. I knew the abortion rate for babies with Down syndrome was high (90%), but it really hit home when I was reading these posts . . . "I terminated a T21 pregnancy too."

It makes my blood boil when I see this! It's disgusting and also very sad.

These women are saying how they think about their baby they aborted all the time, they wonder how he/she would have been, and on and on. They are totally lying to themselves to think they "loved" their child. Anyone who really loved their child would not abort. If these women only continued their pregnancies, they would hopefully see that it's not such a "big, bad thing" to raise a child with Down syndrome.

I left a nice comment in response to one of the posts about terminating a T21 pregnancy. Of course the comment was deleted very quickly and the owner of the forum sent me a note. She was obviously irritated with me (she had aborted for T21 also). We went back and forth a couple times and it ended (at least on my end) with me giving her an earful. She was completely advocating for abortion . . . and abortion of a T21 baby. She made me so mad!

Qadoshyah

1/18/09 - National Sanctity of Human Life Day

January 18th was the National Sanctity of Human Life Day. The release from the President is below.

This is interesting to note, especially with the incoming president who is anything but pro-life. Obama wants to sign into law the Freedom of Choice Act. FOCA will make all state laws concerning abortion void, including parental consent and much more. It would be just one more horrible law.

National Sanctity of Human Life Day, 2009
A Proclamation by the President of the United States of America

All human life is a gift from our Creator that is sacred, unique, and worthy of protection. On National Sanctity of Human Life Day, our country recognizes that each person, including every person waiting to be born, has a special place and purpose in this world. We also underscore our dedication to heeding this message of conscience by speaking up for the weak and voiceless among us.

The most basic duty of government is to protect the life of the innocent. My Administration has been committed to building a culture of life by vigorously promoting adoption and parental notification laws, opposing Federal funding for abortions overseas, encouraging teen abstinence, and funding crisis pregnancy programs. In 2002, I was honored to sign into law the Born-Alive Infants Protection Act, which extends legal protection to children who survive an abortion attempt. I signed legislation in 2003 to ban the cruel practice of partial-birth abortion, and that law represents our commitment to building a culture of life in America. Also, I was proud to sign the Unborn Victims of Violence Act of 2004, which allows authorities to charge a person who causes death or injury to a child in the womb with a separate offense in addition to any charges relating to the mother.

America is a caring Nation, and our values should guide us as we harness the gifts of science. In our zeal for new treatments and cures, we must never abandon our fundamental morals. We can achieve the great breakthroughs we all seek with reverence for the gift of life.

The sanctity of life is written in the hearts of all men and women. On this day and throughout the year, we aspire to build a society in which every child is welcome in life and protected in law. We also encourage more of our fellow Americans to join our just and noble cause. History tells us that with a cause rooted in our deepest principles and appealing to the best instincts of our citizens, we will prevail.

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim January 18, 2009, as National Sanctity of Human Life Day. I call upon all Americans to recognize this day with appropriate ceremonies and to underscore our commitment to respecting and protecting the life and dignity of every human being.

IN WITNESS WHEREOF, I have hereunto set my hand this fifteenth day of January, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-third.

GEORGE W. BUSH

Update about the book

We have ordered a copy of our book for Sarah Palin and will be mailing that to her soon. We also have a local lab that would like to have a copy to keep in their waiting room. I may mail a copy to Cathy McMorris-Rogers and Sam Brownback - both have children with DS.

I will be giving our local library a copy of the book this week. The Tulsa library ordered 6 copies of the book for their various branches (how exciting!). I plan on suggesting the book to libraries across the country also.

Qadoshyah

Press Release for book - Down Syndrome: What You CAN Do

The press release for our book came out today!

Down Syndrome: What You CAN Do
-- Qadoshyah Fish, a sister to a boy with Down syndrome felt moved to help other individuals with Down syndrome and their families. Down Syndrome: What You CAN Do, was written to share positive and truthful information about Down syndrome with families, doctors, and other professionals. --

MOODYS, OK, January 14, 2009 /24-7PressRelease/ -- The material in Down Syndrome: What You CAN Do, is written by doctors, medical professionals, therapists, parents and siblings. What makes this book different is that it covers a vast array of topics that many other books do not. The topics in the book range from nutritional intervention, physical therapy, speech therapy, heart concerns, adoption, and even a chapter on the life stories of individuals with Down syndrome.

With the recent passage of the Kennedy-Brownback bill, Pre-natally and Post-natally Diagnosed Conditions Awareness Act, this book should be an excellent source for doctors and medical professionals to give support to families. As one mother of a child with Down syndrome commented, "I wish this book was handed to me after my daughter was born instead of the gloom and doom book I was given by two different people. I felt so powerless and hopeless. Now, people can read this book and know that Down syndrome is a medical condition, real intervention does exist, we have choices and good reason to hope for more."

For more information about Down Syndrome: What You CAN Do, where to purchase, to request a review copy, or to schedule an interview contact Qadoshyah Fish at (918) 598-4004, qf@gotdownsyndrome.net or see http://stores.lulu.com/gotdownsyndrome.

ISBN 978-09794962-3-3

# # #

Alex . . . a young girl with a mystery diagnosis

Cross-posting this information incase there is anybody who can help this girl. Feel free to pass a long to anyone you may know!

-------------------------------------------------------------

From the Spencer Daily Reporter

Alexandria “Alex” Hermstad before.

This was written by the family of Alexandria “Alex” Hermstad, a teenage Storm Lake, Iowa girl who has lost all movement of her body in an undiagnosed illness. How can you help? Print it out, send it to a doctor, a hospital, a university medical school, a media company, the White House. The Hermstad family is praying that somehow, somewhere the story will reach someone who may have an answer. The story is written from Alex’s viewpoint.

Hi, my name is Alexandria Hermstad, but everyone calls me Alex. I have an identical twin sister named Jaci and we are 15 years old. I was always healthy but for almost four years now, I have been fighting an illness that nobody seems to know what it is or why it is happening to me. I live in Storm Lake, Iowa and I am paralyzed. I have to use a ventilator to breathe through a hole in my throat which sometimes gets plugged and I can’t breathe. I cannot swallow food anymore so my diet consists of liquids through a tube in my stomach. My mind still works fine and I understand everything that is going on around me. I can’t speak either, so my mom is helping me to put my feelings on paper.

Jaci and I used to love playing sports, riding horses and snowmobiling. When I turned 11, I began having trouble moving my left arm. By the end of the year, I could no longer walk. We were told to leave our house because the cause might be environmental. So we left. We left everything! Our dog, Gracie, couldn’t even come with us. After nine months and being in three different hospitals, I finally went home.

Since my illness began, we have met so many caring people. We are very grateful for all those who have reached out and shared whatever they could give. I am very thankful for those who have tried to help me. But at the end of each day, I am still here.

Many times I want to scream, but I have no voice.

Many times I want to hide away in my room, but I cannot move.

I want to hug my family and tell them I love them, but I can’t.

I can still move a little corner of my mouth to answer “yes” questions.

I can still cry and tears can still roll down my face, but I cannot wipe them away.

It takes a long time to be able to communicate with my parents. Many times it’s very frustrating to get my thoughts across and then for someone to understand me. What is more frustrating is why do the doctors and researchers we have written to and who have the capability to help me, choose not to help me — like I don’t exist?

I want to do so much but because I am trapped inside my body, I can’t.

(Photo submitted) Alex and her mother, left, sharing a moment now.

I have been ignored by almost everyone who has the power and knowledge to help me. I used to watch medical mystery shows and was always overwhelmed in seeing how a doctor on the show would come forward and do a little extra to save or help their patient. I don’t know why someone won’t do that for me? What I do know is that my illness is “atypical” and not the obvious, which seems to be why doctors are so perplexed. But I can’t get their attention to care enough to help me. I just need someone to care. Even Make-A-Wish denied my wish. St. Jude’s never even tried to help me. President-elect Obama met me in my home, took his picture with me and promised to help me, yet I still wait. My own governor looks the other way. Nearly every national foundation and organization my family writes to responds back saying I don’t meet “criteria”. Every major news organization we write to ignores me. They must not believe five minutes is worthy of helping to save my life. Has our society come to the point that celebrities become a higher priority than rescuing a child with an extremely rare condition?

Celebrities, foundations, politicians, physicians, hospitals, and the list goes on, do not find it in their hearts to get back to me. Why? What would you do for your loved one? All I want is someone with the power and knowledge to help me. I have been rejected because I don’t meet criteria. How sick do I have to get to meet “criteria”?

Recently, a local charity has offered me and my family support by trying to help bring about awareness to my story in hopes it will save my life before it is too late. I am fighting so hard to survive, and even though my voice is silent, I AM SCREAMING ON THE INSIDE TO BE HEARD! PLEASE help me! So many people have told me they love me and they can show this by contacting everyone they know about me so my voice can be heard. There is strength in numbers. Something as simple as taking a few minutes to send a message to all the people in your mailbox could make a big difference.

I am also writing big newspapers. I am asking that all newspapers come together for one day to do something that is completely unprecedented: Publish the same letter across the country so that all may hear my plea … a fresh start to the new year.

It may only take a few minutes, but sharing my letter with someone, a simple random act of kindness, may very well save my life. Please prayerfully hope that I can celebrate another birthday… another Christmas…the day I prayed I would get to graduate from high school.

But even more, a miracle to share in God’s glory.

I am respectfully and passionately asking people who have the power to move — to move for me.

I am asking those who have the ability to scream, to scream for me.

I am asking those who have the capacity to talk, to be my voice.

Everybody tells me to “keep fighting Alex”, so I do. I fight relentlessly … each hour of every day.

Now, I am asking people to fight with me AND for me.

I don’t know why doctors won’t help me … will you?

Last summer, my family began “Alex’s Army”. Will you join Alex’s Army and help me by contacting my e-mail at: alexsarmy@hotmail.com with suggestions and your ideas on how you can help me? Hopefully, and prayerfully, I can find someone who will be willing to help me.

Those who pray, please pray for me as my faith in God has helped sustain me in this battle.

Thank you and God bless.

— Alex Hermstad

Editor’s note: See Alex’s Caring Bridge site at www.caringbridge.org/visit/angelsforalex for updates on her case. A video is also available online at http://www.youtube.com/watch?v=Lq6qotHIiCM (inserted below on this site)

Please spread the word.

January: National Birth Defects Awareness Month

I came across an article at healthnews.com through my Google Alerts today.

January is National Birth Defects Prevention Month.

The article below from healthnews.com is a good article, encouraging help for babies & mothers. But, the truth is that a major part of this so called, "prevention" includes abortion, whether the public wants to admit it or not. So, I thought I'd post this incase anybody has any ideas on any awareness that can be spread from the DS community. I know the awareness may not necessarily be the kind of awareness that is being encouraged, but nonetheless something may be able to be done I think.

I hope to be able to spread a lot of awareness this month by giving copies of our book to doctors, hospitals & even the general public.

National Birth Defects Prevention Month
By: Lara Endreszl
Published: Monday, 5 January 2009

Infants are by far the most fragile form of life that hospitals and families help bring into this world because they are new and have no way of telling us if something is wrong. November was Premature Baby Awareness Month and now it is no surprise that January is National Birth Defects Prevention Month, because babies are a high priority.

A birth defect is defined as a structural, functional, or metabolism abnormality and several thousand of them have been recorded throughout history. As a leading cause of infant mortality including over 20 percent of all infant deaths in the United States each year, the impact of birth defects is greater than anyone would care to think about. There are 18 birth defects common to the rest of the infant population that survive the initial diagnosis and the estimated cost to provide care for those infants is more than $8 billion. According to the National Birth Defects Prevention Network (NBDPN) nearly 70 percent of birth defects are caused by unknown circumstances. Other causes include genetic and environmental factors or any combination of the two. Factors such as quality of life for the mother and baby, history of certain disorders, gene defects, etc, can all cause birth defects.

Research done by the NBDPN says that there are currently 37 states with operational birth defect facilities, 8 states with plans for operational facilities, and still 5 states without any functioning data centers for birth defect research. The main Centers for Birth Defects Centers for Research and Prevention are in the following states providing incredible investigations into trends among infants born with certain defects, innovative prevention tactics, and developing policies for children living with these disorders: California, Texas, Arkansas, Iowa, Georgia, Massachusetts, North Carolina, New York and Utah.

Each January the NBFPN develops a theme in which to provide information relating to birth defects and prevention in a concentrated way. The theme for 2009 is “Getting Fit for Pregnancy,” helping newly pregnant women to deal with the pressures of keeping their bodies healthy while eating for two or more. By spreading national awareness with their theme, many women can benefit from knowing the risks involved in carrying a baby by having the stress of excess weight on their bodies prior to conception. Obesity is a growing epidemic and women who fall into a specific weight bracket in conjunction with their age and height, tend to have riskier pregnancies as a result of the body’s added exertion and are more likely to have hypertension, preeclampsia or gestational diabetes.

With an estimated 120,000 babies born each year in America with birth defects, one in every 33 infants struggles to stay alive each day. Down syndrome, cleft lip or palate, and spina bifida are among the most common birth defects dealt with on a daily basis. Other birth defects include a type of dwarfism called Achondroplasia, a disease affecting connective tissue called Marfan syndrome, a nervous system disease called Tay-Sachs, cystic fibrosis, hemophilia, muscular dystrophy, heart defects, and other musculoskeletal, eye and gastrointestinal defects. To keep your children and their future children safe from birth defects, spread the awareness in order to garner attention and gain support and donations in order to open research facilities in all states and keep prevention—and future infants—healthy.

Qadoshyah

Gabe's Story

Debbie Johnston is a mother to a little boy named Gabe. She is on the Einstein-Syndrome list, so I have followed their journey for a few years.

I will quote what Debbie said, as she explains Gabe's situation well.

Gabe's diagnosis, originally HLHS with DS was considered rare and the original prognosis was very grim. Even the very top pediatric cardiothoracic surgeons had very limited experience with this dual diagnosis. They all wanted to treat him the same as they would a child who did not have DS, which meant he was to have a single ventricle repair. Most kids with DS do not survive beyond age 7 with this repair. We prayed, we researched, and finally we found a surgeon who was able to give Gabe a bi-ventricle repair. As a result, several other children like Gabe were spared the single ventricle repair. They went to the same surgeon we went to, Dr. del Nido of Boston who specializes in bi-ventricle repairs and kids with DS. Only recently he has gained enough data points to start spreading the news of this success, and to warn other surgeons that a single ventricle repair in a child with DS is a very poor option.

If you know of any child with DS who has an unbalanced heart (meaning one half is underdeveloped) I would greatly appreciate it if you could have them contact me. It makes me cringe to know that most surgeons are continuing to perform single ventricle repairs on these kids when there is a better way.

Gabe has a CaringBridge website which can be viewed at www.caringbridge.org/visit/gabrieljohnston

Debbie also made a video montage about Gabe's story, which can be viewed at http://www.youtube.com/watch?v=y7BNDJC_-kM.

If anyone would like to contact Debbie, feel free to leave a comment here or send me an email and I will give you her contact info. Debbie's email address can also be found on Gabe's site.

Qadoshyah