Down Syndrome: What You CAN Do is available at Amazon!

Our book which we recently published, Down Syndrome: What You CAN Do is now available through Amazon! It took a few months to get it into Amazon, but we are very glad to announce that it is finally there.

You can see the book at this link:

Down Syndrome: What You CAN Do by Qadoshyah Fish

We also have full color flyers printed that can be included in new parent packets, or just to hand out to anyone you feel would be interested. Feel free to email (qf @ gotdownsyndrome.net - remove spaces) if you would like some mailed to you!


Qadoshyah

UCLA's Curcumin

I recently was informed of a bioavailable Curcumin formula that UCLA has developed along with Verdue Sciences. The information is absolutely fascinating and it shows a lot of promise for individuals with DS.

This appears to cross the blood brain barrier, which is incredibly important. Curcumin shows a lot of promise in breaking up amyloid beta plaques & tangles, decreasing oxidative stress & apoptosis, and causing neurogenesis & synaptogenesis. It even has the possibility to increase glutathione levels. But, because it is typically not very absorable, it does not do many of these things when just plain ole Turmeric is given.

Verdue Sciences & UCLA have developed a formula called Longvida that is very optimized and they have seen the highest brain levels of Curcumin with this formula. Longvida is not out on the market yet, but the patent is being worked on. UCLA & Professor Frautschy are working on putting together the manuscript of their research for the journals.

We have decided to order some of this Curcumin and give it a try with my brother. It is very safe and has potentially amazing benefits.

I will try to post more information next week, Lord willing. In the mean time feel free to email me if you would like more information - qf @ gotdownsyndrome.net (remove spaces).

Qadoshyah

Why International Adoption . . .

Someone posted this on a DS group I'm on and she gave me permission to post here . . .

Exposing Europe's guilty secret: the incarcerated children of Bulgaria

Views and Records
From The Times

By Rosa Monckton


It is the smell that assaults you - filthy nappies, unwashed babies, rotting
flesh. Then you are hit by the silence, an eerie, unnatural silence, the
silence of babies who have given up hope of ever being consoled, cuddled or
comforted. It is the dreadful quiet of starving, neglected, unloved children
waiting to die.

I was in an institution for children aged three and younger in Bulgaria, and
I found myself crouching beside a cot so that the duty "nurse", who was
three rooms away but who could survey all the rooms through the viewing glass
placed in each dividing wall, was unable to see me. All I could see at this
level were bars stretching all the way to the viewing station, bars imprisoning
these children, whose only crime is to have been born. What sort of a Europe
is it that consigns innocent babies and children to a life like this - a life
bereft of all hope?

The poor child whose cot I was hiding next to had hydrocephalus. His swollen
head was turned to one side, and I could see his brain oozing out of his
skull. The girl in the adjacent cot was so pitifully thin that she looked
flattened, like a cardboard cut-out. The next one along had his legs tied together,
with an old pillow case pulled over them - I felt a huge growth on one of
his spindle-like legs.

The children in this particular wing have no human contact. They are fed
lying on their backs, and have their nappies changed only when there happens to
be a supply of new ones. Not one single word is uttered to them, so none of
them is able to talk. This is how they live, and this is how they die.

Over the past few months I have visited eight institutions in Bulgaria, and
have been staggered by the total lack of humanity. The baby world does not
exist for these children.

Children in Western Europe are institutionalised because of abuse and
neglect, whereas in other parts of Europe, particularly the old communist
countries, it is because of abandonment and disability. In Eastern Europe there is
still a widely held belief that disabled children are best dealt with by being
removed from their families and separated from society.

So the flow of children into the institutional system continues, with many
parents being forced by the State to hand over their children at the moment of
birth if a disability has been diagnosed. Bulgaria has the second-highest
rate of placement of children in institutions in Europe (Russia is top of the
list).

In another institution I was taken around by a blonde Cruella de Vil:
stiletto heels, heavily made-up, clutching a clipboard as we marched along a
corridor. Stopping at each window, she consulted her list, took the pen from behind her ear and pointed: "This one cerebral palsy, this one very handicapped,
this one Down's Syndrome, this one don't know...."

I asked to go into one of the rooms and picked up the nearest child, a
living skeleton. And what was wrong with him? He was blind. Just blind. But now he was starving to death, rocking and banging his head against the side of his
cot. On another visit, I asked the director, a paediatrician, about a child
with Down's Syndrome. Why was she here? "She has Down's Syndrome, she will
die." I told her that this was not true, that these children could live
fulfilled lives. Angered, she asked: "Are you a doctor?" No, I replied, but I was the mother of a child with Down's Syndrome. "But you are not a doctor, so you
don't understand... these children have no use. They should never have been
born."

I am working with a charity called The Bulgarian Abandoned Children's Trust
and our aim is to re-educate government, doctors, midwives and parents to
bring an end to institutionalisation and build small-group homes for the
children to move into. Because, unlike Romania, which has made huge progress in the reform of its institutions and has shown that it is ready and willing to
change, Bulgaria remains in denial. The Government sees little need for change.
Nor has it come under the sort of pressure that Romania faced when it was in
discussions to join the European Union and reform of its children's
institutions was a condition of entry.

One of the problems with the old Eastern bloc countries is that where the
State was the guarantor of all moral values, it dehumanised society. The idea
of charity, of social responsibility, of caring for others, was eradicated.
There seems to be no recognition on the part of the carers that they share
something with these children - and that what they share is a common humanity. In homes for the dying in India, you find volunteers serving food, cleaning, or
simply talking to patients 24 hours a day. There is a purpose and a feeling
of life, and hope, in even the most impoverished homes.

The sterility and eerie silence of the Eastern European children's homes is
all the more shocking by contrast. These children are Europe's guilty secret,
hidden away from the world. We need to talk about them, to bring the whole
issue out into the open. We need a co-ordinated European strategy, operating
at the highest levels of government. A tightly run ten-year plan could lead to
many of these shameful places closing their doors. This will need to include
social reform, services in the community, fostering being made an
occupation, easier adoption laws, the building of small-group homes and, most
importantly, more support at birth. More than 96 per cent of institutionalised
children across Europe have at least one living parent. Help is needed to persuade families that they can cope.

It is too late to help many of the children incarcerated in institutions -
their lives are already irreparably damaged. But we can stop the flow of
children into these places. We need early intervention programmes in hospitals and maternity wards; we need to make people care. If you are one of those people who hunts through the supermarket to avoid buying a battery-raised chicken, think for a moment about these children, who are treated no better

If only . . .

On February 11, two little girls died in Eastern Europe from the flu. These little girls had Down syndrome and because of that were put in an institution. Many of the children in Eastern Europe who are born with a diagnosis of Down syndrome, are placed in orphanages and when they turn 5 years old are sent to an institution. The children, once placed in an institution, typically die within the first year of being there. This is a very sad reality and something that happens all the time.

If only the perspective of doctors in these countries would change.

If only the doctors would not tell the parents the "state will do a better job" of raising these children that have something "wrong" with them.

If only parents weren't deceived into thinking these children are such a hardship.

If only countries wouldn't make adoption such an expensive, complicated process, so many more of these "unwanted" children could have families.

If only these children were given love, they would thrive.

But, instead, the children in these orphanages and institutions are left tied to cribs, starved, neglected, shunned, and unloved. They die at a young age and hardly anybody knows. Just like these two little girls below.

Margarita ~


Katarina ~

Qadoshyah

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.