Thursday, May 31, 2012

Finding The Words To Talk About Disability


Finding The Words To Talk About Disability



Read More Here
http://www.huffingtonpost.com/amy-julia-becker/finding-the-words-to-talk_b_1449819.html


William came home from school a few weeks back and he said, "Mom." He said it as a sentence, the way he does when he has something important to tell me. And then again, "Mom. My friend Ashley is not good at listening. And she screams."
William is three. He attends a local public preschool, and he's in an "integrated" classroom, which is to say, a classroom where typically developing children learn and play alongside children with special needs. Three years ago, William's older sister Penny was in the same classroom, but she entered it with an "I.E.P.," an Individualized Education Plan. Penny has Trisomy 21, also known as Down syndrome, and that third chromosome impacts nearly every aspect of her development. She wears braces to support her flat feet and weak ankles. When she was in preschool, she relied on sign language in addition to spoken words to communicate. She received Occupational Therapy, Speech Therapy, and Physical Therapy as a part of her classroom experience.

Wednesday, May 30, 2012

Stormy Rich, Florida High School Student, Barred From School Bus After Reporting Bullying Of Special Needs Student


Stormy Rich, Florida High School Student, Barred From School Bus After Reporting Bullying Of Special Needs Student


Stormy Rich
Read More Below


Stormy Rich, an 18-year-old Florida student, says she was punished after reporting bullying of a special needs student on a school bus, and standing up to those bullies when the school didn't take action.
Rich, an Umatilla High School student, was riding on a middle school bus because she had earned enough credits to avoid a first-period class, getting to school later by taking the bus for the neighboring middle school, the Daily Commercial reports.
But one girl on the bus -- a special needs student -- was regularly being picked on by her peers, but couldn't comprehend what was being done to her.
"Just because she doesn't understand doesn't mean that should be happening to her," Rich told WOFL-TV.

Why are anti-abortion legislators cutting essential funds for special-needs children?

Why are anti-abortion legislators cutting essential funds for special-needs children? 

Read More The Pro-Life Parad

On April 12, Governor Jan Brewer signed a bill making Arizona the eighth state in the union to ban abortions beyond 20 weeks. Like most other laws of its kind, House Bill 2036 had been camouflaged as a measure against suffering, predicated on the notion that a fetus at 20 weeks can feel pain. Every woman who’s ever been pregnant, however, knows what the law really means: Twenty weeks marks a crucial point in a pregnancy, when fetal abnormalities can be detected, often for the first time. Many women confronted with a grim prenatal diagnosis choose to have an abortion. Now, in Arizona, they can’t.
It would be logical to expect, then, that these new restrictions on abortion would be accompanied by increased public services for women and children—especially for children with developmental disabilities. The laws should also lead to stronger support for physically, intellectually, and developmentally disabled teenagers and adults—which is, after all, what the healthier and luckier of these babies grow up to be. You might expect the people passing these laws to rally behind the Patient Protection and Affordable Care Act, which bars insurance companies from turning anyone away based on a pre-existing condition; after all, no condition is more pre-existing than one you’re born with. 

Thursday, May 24, 2012

Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

GIGGLING, smiling and laughing, it’s hard to imagine that toddler Dylan Edge is anything but a healthy happy child.
But without constant care and medical treatment, Dylan – who has suffered from Patau’s syndrome since he was born and regularly lapses into fits and seizures - would have died when he was born.
Now, almost three years after Dylan’s parents Claire and Stuart faced losing their newborn baby, the couple are hoping to raise thousands of pounds for Alder Hey Children’s Hospital which they say helps keep their family alive every day.
“We really want to do this walk, we have done a lot of fundraising events but this is our biggest challenge yet,” said Claire, who last walked the Sandstone Trial when she was a teenager and will now be walking it with 23 doctors, nurses and friends and family.

Read More here
Brave Blacon parents of a miracle baby need your help to raise money for a lifesaving hospital

Tuesday, May 22, 2012

New changes in LWT13

We are expanding!!

Living With Trisomy 13 is now AN OUTREACH FOR TRISOMY AND OTHER RARE DIAGNOSES.
We are expanding to encompass a larger group of families. There are many families out there with a diagnosis similar to Trisomy 13. These families to have now where to turn and need hope, courage and inspiration. Come visit our site www.livingwithtri13.org and see our albums. If you are a parent or family member facing a difficult rare diagnosis, have an encouraging story of hope, or a treasure memory story to share please contact me Vanessa@livingwithtri13.org.

I would also like to give a very warm welcome to our newest board member Robin Martin. Robin will be joining our organization as the Director of Administrative Services. 

Take care and God bless
Vanessa Hernandez
Executive Director
Living With Trisomy 13
An outreach for trisomy and other rare diagnoses

Saturday, May 19, 2012

Global News Trending...The children survivors of Trisomy 18 and 13 are increasing

Global News Trending

The children survivors of Trisomy 18 and 13 are increasing 
http://www.gtdaily.com/the-children-survivors-of-trisomy-18-and-13-are-increasing


Children with Trisomy 18 managed to survive to older ages. This study result will be a great news for parents of children with Trisomy 18 and 13 because more children are surviving for this disease. Details!!!!!Trisomy 18 and 13: More children are survivingStudy shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected.

Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams – collegenews.com)

Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect


Mother's fury after Facebook BANS her for posting pictures of her baby son who lived for just eight hours after being born with rare birth defect

Read more: http://www.dailymail.co.uk/news/article-2146588/Mothers-fury-Facebook-removes-pictures-baby-son-lived-just-hours-born-rare-birth-defect.html#ixzz1vK9c01kH



'They of course gave us the option to terminate,' said Heather. But they chose to carry their baby full term and turned to God for strength.
'My husband and I, we started prayer and we knew that God knew since the beginning of time that he had us for this,' she said.

According to Facebook's community standards page, there are nine types of content that may be deemed offensive and removed: Violence and Threats, Self-Harm, Bullying and Harassment, Hate Speech, Graphic Violence, Nudity and Pornography, Identity and Privacy, Intellectual Property and Phishing and Spam
Heather said she has no idea which category her child's picture falls under but has now launched a protest  - posting the picture several times and getting her friends and family to contact Facebook


Thursday, May 17, 2012

Grieving mother plans fundraiser


Grieving mother plans fundraiser

Click below to read the full article 

An inspirational young mother has the biggest bands in Milton Keynes rallying around her to raise funds for the specialist nurses who enabled her to take her ‘angel’ home to die.
Baby Emily Elizabeth was given just four days to live after she was born with a genetic syndrome, Trisomy 18, that went undetected during pregnancy.
But despite the odds tiny Emily, who weighed just 4lb 5oz when she was born, lived for 26 precious days.
She said: “Edwards, or Trisomy 18, is the second most common syndrome after Down’s Syndrome but if you ask people if they’ve ever heard of it they say ‘no’. If you ask if they’ve heard of Down’s Syndrome they say ‘yes’."
“I thought I was walking alone but setting up Emily’s Star has put me in contact with other people who have gone through the same as I have."
“Emily’s Star has helped Emily to live on but it’s also helped me a
lot.”




Join us on Twitter https://twitter.com/#!/LivingWithTri13

Join us on Twitter https://twitter.com/#!/LivingWithTri13

Wednesday, May 16, 2012

Join us on Pinterest

News Blog Entries http://www.livingwithtri13.org/trisomy-13-news.htm
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Obama to Cut Medical Benefits for Active, Retired Military, Not Union Workers

Obama to Cut Medical Benefits for Active, Retired Military, Not Union Workers

 “The proposed increases in health care payments by service members, which must be approved by Congress, are part of the Pentagon’s $487 billion cut in spending. It seeks to save $1.8 billion from the Tricare medical system in the fiscal 2013 budget, and $12.9 billion by 2017.”
This is a plan that is sure to enrage Congressional Republicans and cause a big fight on Capital Hill.

Read more at http://www.inquisitr.com/200985/obama-to-cut-medical-benefits-for-active-retired-military-not-union-workers/#z5tihPdgRH5X4kpK.99

Tuesday, May 15, 2012

Miracle League gives kids with special needs a turn at bat


Miracle League gives kids with special needs a turn at bat

Published: Tuesday, May 15, 2012, 9:29 AM     Updated: Tuesday, May 15, 2012, 9:29 AM


The Miracle League of Greater New Orleans gives kids with disabilities a chance to play baseball, to put on uniforms and to run — or be pushed — around the bases rather than just sitting on the sidelines and watching. It gives them a chance to be part of a team and of an organized league. It gives them a chance to enjoy a favorite American game.
miracle-league.jpgTyrese Primus goes up to bat with a little help from his buddy, Michael Kennedy.
“The main thing is, they have fun,” says Gina Lorio, executive director of the nonprofit group.

NEW Printable Trisomy 13 - Patau Syndrome Brochure (pdf) for Families and Professionals

NEW Printable Trisomy 13 - Patau Syndrome Brochure (pdf) for Families and Professionalshttp://www.livingwithtri13.org/Trisomy-13-Lwt13-New-Brochure.htm

Monday, May 14, 2012

NEW Media Page, Press Releases, Articles and Upcoming Eventshttp://www.livingwithtri13.org/trisomy-13-mediakit.htm


Trisomy 13 - Living With Trisomy 13 Media Page and Media Kit. Includes a downloadable PDF media kit and articles featuring Living With Trisomy 13.

Saturday, May 12, 2012

HuffPo writer aborts daughter with Trisomy 13 | Jill Stanek

That night I tried reading about the procedures, but I kept feeling nauseous. Sophia was now moving regularly, and we were planning a 21-week D&E or induced birth.
HuffPo writer aborts daughter with Trisomy 13 | Jill Stanek

* Wow, normally I would not post ANY article that has to do with abortion. I just wanted everyone to see that this was aborted at 21 WEEKS. An induced BIRTH!! How could you name your child then allow it to be ripped from your womb??

~ Vanessa

Join us on Facebook https://www.facebook.com/groups/Trisomy13/

Join us on Facebook https://www.facebook.com/groups/Trisomy13/

Friday, May 11, 2012

Bella Santorum turns 4!!!

Thank you all so much for the birthday wishes yesterday! 

Our family has another birthday to celebrate in just a few days, when our youngest daughter Bella turns 4 on Sunday, May 13. We’d like to make Bella's birthday as special as possible, so we are asking you all to send her a birthday wish on our website. Please take a moment to send her a wish using the link below, and please LIKE and SHARE this post so your friends and family can send their birthday wishes, too!


http://www.ricksantorum.com/

A truly amazing video


Marine returning home greeted by 6-year-old son who learned to walk while his dad was gone (VIDEO)



http://news.yahoo.com/blogs/sideshow/marine-returning-home-greeted-6-old-son-learned-130055137.html

In a heartwarming video that will soon be flooding email inboxes, Facebook walls and Twitter feeds, a U.S. marine returning home from Afghanistan is greeted by his 6-year-old son at a ceremony inside a school gymnasium. The boy, who had cerebral palsy, was unable to walk when his father, Staff Sgt. Jeremy Cooney, was deployed.

Thursday, May 10, 2012

Mother's Inspiring Video About her Blind Baby Boy


Mother's Inspiring Video About her Blind Baby Boy



People ask her why she didn't choose to abort her boy. They stare at both of them. They talk behind their back. But none of that matters because this mother knows that her boy is beautiful just the way he is. What a great video.



http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html?fb_comment_id=fbc_10150994588764845_221718654_10151003443099845#f356863d7c

About Chromosomal Abnormalities


About Chromosomal Abnormalites

May 9, 2012 - 9:08am


An example of a trisomy is Down syndrome, which is also called Trisomy 21, as the individual has three chromosomes in pair 21.
Symptoms of Down syndrome include small hands and feet, poor muscle tone, and a flat face. Several health conditions can occur with Down syndrome, including thyroid problems, hearing problems anddementia, according to the National Institute of Child Health and Human Development.

Wednesday, May 9, 2012

Be sure to check out Living With Trisomy 13 on Instagram

This was a shout out from a follower on Instagram. I thought the response was great!! Thanks to you all! I'm still working on getting more pics up!

 
                                                                

Saturday, May 5, 2012

Living with Trisomy 13 article in Special Needs.com

http://www.specialneeds.com/children-and-parents/general-special-needs/living-trisomy-13

Living with Trisomy 13


Raising a special needs child is by far not an easy task.  Your daily life changes in ways that no parent can ever imagine possible.  Now add into that the fact that your child has a genetic syndrome that doctors and medical professionals term “incompatible with life."  Trisomy 13 is one of the syndromes, which was thought at one point to be fatal in all cases.  Well it’s not, our site is filled with over 100 albums of living survivors some who are in their teens and older.  Our mission is to erase the stigma that is attached to these children and show their lives through their own stories.

"Incompatible With Life," A Death Sentence for Unborn Children | LifeNews.com

"Incompatible With Life," A Death Sentence for Unborn Children | LifeNews.com


The new group is calling for the introduction of legislation which would allow abortion where the unborn baby is diagnosed as being “incompatible with life”, meaning that she cannot survive outside the womb. She may die within the womb before the pregnancy term comes to an end, or alternatively, shortly after birth.


Every parent who finds themselves in this horrific situation, should at least be able to look back and accept that it was the condition that took their baby away from them, and no action that they initiated. The experience of Matt and Ginny Mooney, whose little boy Eliot was born with Trisomy 18 and lived for 99 days, inspired them to make the video 99 Balloons based on his life, and the love and care that they gave him during that time. Watching the short video of Eliot’s life is a teaching moment for all of us.

Friday, May 4, 2012

Abortion Backers: Give Women iPods to Drown Out Ultrasound


Abortion Backers: Give Women iPods to Drown Out Ultrasound


http://www.lifenews.com/2012/05/03/abortion-backers-give-women-ipods-to-drown-out-ultrasound/


A Texas woman’s novel way of dodging abortion regulations may be music to the ears of pro-choice advocates, but it highlights the abortion movement’s selective desire to conceal truth.
In many states, pro-life groups have successfully enacted laws requiring women to receive an ultrasound before an abortion procedure. Texas law goes one step farther, requiring women seeking abortion to hear their children’s heartbeats and a medical explanation of the sonogram. Denise Paolucci, 35, has decided to combat the new law by providing iPods to women seeking abortion – enabling them to tune out the required information.

Tuesday, May 1, 2012

FIRST-PERSON: The dark side of prenatal testing

FIRST-PERSON: The dark side of prenatal testing



Ms. Monahan says prenatal testing is not "inherently evil." Sometimes these tests detect conditions for which doctors can then treat the baby in utero. But she told CNN, "the fact that it leads to so many abortions is absolutely troubling."