47 Strings. A story about Tessa

Here is the opportunity to educate kids about Down Syndrome.  47 Strings is a new picture book about a little girl with Down Syndrome by Becky Carey.

Read about this wonderful book and if you can, help this family get this book published so they can help us all with awareness and education.

A children’s picture book about the remarkable lessons to be learned from a little girl named Tessa, who was born with Down syndrome.

 

Hello—my name is Becky Carey. I am the author of the children’s book, 47 Strings: Tessa’s Special Code. I was inspired to write this book by the birth of my beautiful baby daughter, Tessa, who was born with three 21st chromosomes instead of the usual two—otherwise known as Trisomy 21 and Down syndrome.

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births and is the most frequently occurring chromosomal disorder. People with Down syndrome have 47 chromosomes instead of the usual 46 – which explains the title of my book.

One of the first things we needed to do was tell Tessa’s 7-year old big brother, Casin, about her Down syndrome diagnosis. We wanted him to be prepared if and when people asked him questions. Mostly, we wanted to make sure that he learned about Down syndrome in a manner that was relaxed, understandable and heartfelt. 

Casin loves stories, I wrote this story with him in mind—and read it to him as he sweetly held Tessa’s hand. We recorded that moment and posted it on YouTube and on our blog. It was perfect and real.

Check out the video at:http://www.youtube.com/watch?v=uKZuS5S0q5M

Check out the blog at:http://deartessa.com/

Our YouTube video has reached over 10,000 views because of people like you…who have shared it with friends, family, or on your Facebook pages. THANK YOU! Keep spreading the joy and the good word! 

Now we need your help to publish 47 Strings: Tessa’s Special Code as a children’s picture book–to inspire, help guide, and reassure parents and families all over the world that kids with “47 strings” just means there is a little more of them to love. The money raised will be used to cover the cost of professionally illustrating, editing, publishing and printing 2,000 beautiful hardcover books.

BUT…we only have 30 days to reach our goal! So we need you to do these three simple things:

1. Pledge any amount of money!
2. Spread the word by sharing this with others!
3. Receive great incentives!

Without you, we won’t reach our goal and make it possible to help other families like mine as they start their journey. Help us spread understanding and awareness of Down syndrome.

“There are only a few books out there for younger children about Down Syndrome. I especially like how Tessa's story is more positive from the parents’ perspective. I could definitely see this book being utilized by:

- Parents to educate other siblings, and their friends, in an easy-to-understand way.

- Classrooms to educate peers of a child with Down syndrome.

- Hospitals and pediatricians to give to parents upon diagnosis of Down syndrome.”

– Sue Dahlen, mother of 3 girls including middle daughter, Caroline, who has Down syndrome

Special thanks to Ann Gorgen, photography; Jason McGraw, videography; and Carrie Stidwell O'Boyle, writer/editor.

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What is good information about prenatal testing?

Parents and prospective parents need more information about testing and development of children.  But it also needs to be good information.  Is this good information?

Testing times before a baby

Jaya Shroff Bhalla, Hindustan Times
September 09, 2012

Are you pregnant or planning to have a baby? If you are, just the tests to ensure your baby is free of inherited genetic disorders can run up to Rs. 2 lakh, depending on your age and the history of diseases in both families. Modern diagnostic tools are helping gynaecologists identify an

increasing number of foetuses with genetic disorders. Women choosing to conceive after the age of 35, unhealthy, inactive lifestyles with poor diet, smoking and alcohol, and yet unidentified environmental factors are increasing the number of foetuses being identified with genetic disorders. “We usually advise women to undergo certain tests even before they conceive to identify problems in the parents’ medical history and accordingly prepare them for a healthy pregnancy,” says Dr Alka Sinha, senior consultant, foetal medicine at BL Kapur Super Speciality Hospital.

“Before conception, the parents’ medical history, blood sugar levels and blood groups should be checked along with tests for thalassaemia, immunity against rubella, HIV, hepatitis and thyroid, among others,” she says. Even high blood sugar can affect the baby’s health. In India, over 80% babies are born with congenital defects because of the mother’s abnormal sugar levels.

“These tests are repeated in the first trimester. Between the 11th and 13th weeks, we test for the double marker, which is a simple blood test along with an ultrasound nuchal scan to check for chromosomal abnormalities,” said Dr Anuradha Kapur, senior consultant, department of gynaecology at Max Healthcare. This test measures the fluid collected under the skin at the back of the baby’s neck to assess the risk of Down’s Syndrome and other chromosomal and genetic disorders.

About one in 20 women above the age of 35 years are at risk of having a baby with Down’s Syndrome. If the scan reveals a high probability of Down's Syndrome, the only way to confirm is amniocentesis, which are invasive pre-natal tests. Samples are drawn from the amniotic fluid or a piece of placenta is extracted or blood sample taken from the foetus to rule out infections.

“In India, pregnancies can be medically terminated up to 20 weeks. So, a pregnant woman must get another ultrasound done between the 18th and 20th weeks to check the foetus for abnormalities in the heart, lung or kidney,” said Dr Kapur. Closer to the delivery dates, women are asked to take sugar tests again, and after 28 weeks, undergo another Doppler test. But at this stage, even if there are abnormalities, termination of pregnancy is not an option.

That’s one reason why Delhi-based engineers Rohit and Priya Chabbra were forced to abort two foetuses after prenatal tests in the second trimester revealed that she were carrying babies with thalassaemia, a merited blood disorder. They opted for in-vitro fertilisation (IVF) the third time. IVF conception gave them the option to test for genetic defects in the baby before the implantation of the embryo, assuring them a healthy baby. Priya is expecting her baby early next year.

Pre-implantation genetic diagnosis (PGD) tests embryos within the first five days of formation using IVF for genetic disorders. Only healthy embryos that test negative are implanted. The test costs R50,000 but it’s well worth it. “Besides the money wasted, abortion causes mental trauma. We advise IVF parents with detrimental factors such as late age of conception, bad genetic family history, poor health or past miscarriages to undergo the test,” Dr Abha Mazumdar, IVF head at Sir Ganga Ram Hospital.

Prenatal FAQs

Who needs prenatal tests?All pregnant women must take several prenatal tests at different stages of pregnancy all through the nine months.

What could be the total cost of the tests?It could range from Rs. 25,000 to Rs. 40,000 depending on the centre you go to. Costs could go up to Rs. 1 lakh or more if yours is a high-risk pregnancy.

What is a high-risk pregnancy?Women who are adolescents or older than 35, have a history of premature births, have already had babies with heart or genetic problems, are carrying two or more babies, have high blood pressure, diabetes, thyroid, heart or kidney problems, cancer, HIV, hepatitis, thalassemia minor or seizure disorder.

Is IVF the only option if I have a history of pregnancy terminations because of genetic or other faults?Of course not. One can opt for the normal conception but tests for genetic disorders in the baby can only be done between the 11th and 14th weeks, which could mean another termination if the child again carries the defect.

How does pre-implantation genetic diagnosis (PGD) help?It can be done only in IVF conceptions before the embryo is implanted in the woman. With the evolution of science, one can check for genetic abnormalities even before implantation, hence preventing a case of genetic disorder in the child. 

Which are the centres offering PGD?Reliance laboratories in Mumbai and Sir Ganga Ram Hospital in Delhi offer PGD.

What are your thoughts?

Be gentle.

Young girl with Down Syndrome, wrongly accused of horrible crime released

I have been following the story of the young girll in Pakistan that has been accused of the crime of blasphemy.  A lot of the Down Syndrome community has been commenting and supporting this young girl and her family.  I hope this is the end to the nightmare this family has been living.

Pakistani Christian girl accused of blasphemy released on bail

From Reza Sayah and Nasir Habib, CNN

updated 11:12 AM EDT, Sat September 8, 201

Islamabad, Pakistan (CNN) -- Pakistani authorities released Saturday a teenage Christian girl detained over accusations of blasphemy in a case that stoked religious tensions.

Her face concealed with a green scarf, Rimsha was ferried from Rawalpindi jail first by an armored personnel carrier and then by helicopter to an undisclosed location after a judge granted bail the day before.

The chopper's force at one point blew away the 14-year-old's covering. She appeared sad and scared.

A man who went into the jail to collect Rimsha told CNN she was crying.

"Why is this happening with me?" she asked. "What did I do?"

The man did not want to be identified.

Judge Muhammad Azam Khan ordered Rimsha's release after hearing lengthy arguments from both sides.

Her lawyer, Pervez Khan, argued she should be freed on the grounds that she was an innocent girl whose intelligence level was low for her age, according to a medical report.

Khan said the girl was framed by a Muslim cleric who planted evidence against her.

The cleric's lawyer said Rimsha burned pages of the Quran and that she should be punished no matter her age. Blasphemy is punishable by death in Pakistan.

Rimsha's family fled their home on the outskirts of Islamabad from fear of retribution. Amnesty International said hundreds of Christians have left Rimsha's neighborhood she was accused.

Police: Muslim cleric framed girl in Pakistan blasphemy case

In recent years, Pakistan's religious minorities have come under violent attack and human rights groups have documented cases of people accused of blasphemy who have been killed by members of the public.

Authorities arrested Rimsha and her mother last month after a neighbor accused her of burning pages containing texts from the Muslim holy book and angry mobs gathered at their house in Islamabad.

Rimsha had two shopping bags with her: one containing ashes and the other, the partially burned pages, police said. She had gathered the paper as fuel for cooking, authorities said.

The case, however, took a dramatic turn last weekend when police said the neighborhood cleric, Khalid Jadoon Chishti, had planted evidence in order to link Rimsha to the blasphemy allegations.

Now, the imam will himself face blasphemy charges for tearing pages out of a Quran to use as evidence against the girl, police said.

Even though Rimsha's lawyer said no one actually saw the girl burning the papers, the neighbor went to Chishti with the bags for safekeeping as evidence.

Chishti wasn't certain that simply burning pages with texts from the Quran would be enough to convict Rimsha on blasphemy charges, police said.

So, he added two pages from the actual holy book to the bag to bolster the case.

Chishti was arrested a week ago after three witnesses told a judge about the imam's actions. He was sent to jail for 14 days, accused of evidence tampering.

Chishti has denied the allegation.

Amnesty International called Rimsha's release encouraging but said the Pakistani government must urgently reform its blasphemy laws to prevent similar cases in the future.

"Rimsha, her family, and her Christian community in Islamabad remain under serious danger despite her being granted bail and even if she is eventually found innocent," the group said.

Rimsha's case, Amnesty said, "highlights the profound danger to communal harmony and rule of law caused by Pakistan's blasphemy laws."

Opinion: Muslims in Pakistan, show compassion and justice

CNN's Moni Basu contributed to this report.

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Pupdate Friday Smile

Just a couple cute photos of the pups.  Yes, that is a silly Snuffy playing with the very tired  Peruvian pup.

Be gentle.

A young man with Down Syndrome not allowed to fly home with family

Because he has Down Syndrome?  This is disturbing.  I hope all the facts come out and it is not really true that this boy was denied access to the plane because he has Down Syndrome.

KTLA News

3:22 p.m. PDT, September 4, 2012

LOS ANGELES (KTLA) -- A family claims they couldn't board their cross-country flight to Los Angeles after their son was singled out and discriminated against because he has Down syndrome.

Joan and Robert Vanderhorst were flying on American Airlines from Newark, New Jersey to Los Angeles on Sunday with their 16-year-old son Bede

But they say that as they waited to board the flight, they were told that they weren't allowed on the plane.

Joan pulled out her cell phone and began to videotape, documenting what she believes was a violation of her son's civil rights and the Americans with Disabilities Act.

Bede -- who was labeled a flight risk -- can be seen in the video sitting at the gate, quietly playing with his hat.

In the video, you can hear Joan sobbing and her husband expressing disbelief.

"He's behaving," Robert says. "He's demonstrating he's not a problem."

"Of course he's behaving. He's never not behaved," Joan adds.

"I kept saying, 'Is this only because he has Down syndrome?'" Joan said in an interview with KTLA via Skype.

The family has flown together dozens of times. The only thing different about this flight was that they had upgraded for the first time to first class.

"This little boy had a seat in the first class area, and for some reason, they didn't want that. That wasn't acceptable," Joan said.

American Airlines claims Bede was "excitable, running around, and not acclimated to the environment" and that the pilot had unsuccessfully tried to calm him down.

"For the safety of the young man and the safety of others, American Airlines offered to book another flight for the family," American Airlines spokesman Matt Miller told KTLA.

Robert says the family was warned their son's behavior was a concern because their first class seat was to close too the cockpit and a distraction to the pilot could cause a mid-flight emergency landing.

"My son is no different from a 4 or 5 year old as far as behavior," Robert insisted.

The Vanderhorsts claim Bede hadn't caused any troubles and instead was being discriminated against.

Eventually, airline personnel called airport police to intervene -- and the family was booked on a United Airlines flight.

The Vanderhorsts eventually got to their home near Bakersfield and say they were not refunded for their upgrade fee, which they were never able to take advantage of.

They say they plan to sue American Airlines, and hope their experience will teach the company and people in general a valuable lesson.

"Respect each person's dignity," Robert said. "Every one of us should be treated with equal dignity."


What are your thoughts?

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