KIDS: Keep Infants with Down Syndrome

 

Guest blog post by Leticia Velasquez, Co-founder of KIDS (Keep Infants with Down Syndrome) and author of “A Special Mother is Born.”

Dating sites are very popular these days. You fill out a profile and find your ideal mate for life. Naturally, most profiles are a bit flattering, “energetic, attractive man who loves candlelit dinners and walks on the beach. . . .” Imagine a profile with no photo and the following description: I have mental delays and physical challenges including; heart defects, low muscle tone, hearing loss, visual impairment, spinal instability, increased tendency towards obesity and leukemia, shorter lifespan and limited prospects for happiness.

DSC_8672Most people would avoid this poor individual like the plague. Yet that is precisely the description given to women expecting a baby with Down syndrome. Nothing positive, only a laundry list of possible defects. The perfect baby she has been dreaming of has been reduced to a nightmare of neediness. No wonder from 75 to 92% of pregnant women receiving a prenatal diagnosis of Down syndrome chose to abort their baby. In one fourth of doctors’ offices, it is the doctor who holds up this list as an attorney citing evidence stating “This life is not worth living.”

The mother of the unborn baby with Down syndrome is often under relentless pressure from her spouse, relatives and even her own conscience as it is suggested “Think of your other children, what would having a baby like that do to them?” Who is speaking for the silent child at this point? As prenatal screening is performed earlier than ever, before the mother has developed a relationship with the baby in the womb, she has no idea how to counter the onslaught of bad news and, too often, has little knowledge of the positive aspects of raising a child with Down syndrome.

KIDS in 2009 March fo rLifeThat’s where advocacy groups are filling the gap. From diagnosis to adulthood, those who are blessed to know people with Down syndrome are flooding the media with joyful images of fulfilling lives lived with an extra chromosome. My group, KIDS Keep Infants with Down Syndrome, has marched in the March for Life since 2009 to call attention to the joy of life with someone with Down syndrome. When we started, we were considered a novelty, but now I am happy to say, perceptions of Down syndrome are changing.  Target, and Nordstrom’s feature ads with models with Down syndrome and a Spanish bathing suit designer chose an adorable baby with Down syndrome as her model. Award winning films like “Produce” about a man with Down syndrome whose work has become an inspiration, are available on the Internet. A TV reality show based on Tim’s Place, an Albuquerque restaurant where hugs are on the menu is coming next season.

Science is contributing to the wave of positive news about Down syndrome with six promising clinical trials of medicine to help ameliorate cognitive delays and suggestions on how the diagnosis of Down syndrome can be made in a more patient friendly manner. After all, there are two patients involved! A 2011 survey of families who include someone with Down syndrome by Dr. Brian Skotko provides insight into day to day life; ninety-nine percent of parents were happy with their child with Down syndrome and those with Down syndrome reported an equal amount of happiness with their lives. Ninety seven percent of siblings reported that they had become better people thanks to their sibling with Down syndrome.

n1213717587_30044789_5508I know this to be true as our entire family has become more compassionate, more giving, and more able to stop and smell the roses since our youngest daughter Christina was born with Down syndrome in 2002. Now we just want to help the world to see as my friend Eileen Haupt, the co-founder of KIDS says,” Doctors can tell you about the challenges which come with a child with Down syndrome but they can’t tell you about the love they bring.”

 

 

Brothers are a Gift: Andrew and Joseph

 

Guest Blog post by Kim Dupliantier.  Kim & Allan Dupliantier live in Stafford, VA.  Their sons, Andrew (9) & Joseph (2), are just two of their nine children. Brothers Andrew and Joseph both have Down Syndrome.

Andrew and Joseph have enriched our lives in countless ways. These special boys bring so much love and joy to our family. Their smiles light up a room. We have all learned to be patient as we have watched them persevere to reach developmental milestones that I took for granted with my other children-sitting, crawling, eating, walking, talking. We celebrate with them and feel their pride. They have taught my other children to be kind, charitable and compassionate as they are quick to help Andrew and Joseph with their needs. This has extended beyond our home, as two of my daughters have volunteered with therapeutic horseback riding for other children with special needs. One of my daughters is preparing to become a nurse, and has expressed interest in working with people with special needs. Another daughter would also like to pursue some field of therapy. I believe this desire has come from having Andrew and Joseph in our family.

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Photo Credit: Tiffany Michelle Photography, LLC

The most important way that brothers Andrew and Joseph have enriched our lives is by showing us the power of prayer and that miracles do happen. Both Andrew and Joseph were born with many medical issues. Andrew was born with a heart defect and duodenal atresia and has had numerous surgeries and complications. God has blessed us with wonderful doctors and nurses and we have witnessed firsthand His healing power. When Joseph was born ten weeks early, he weighed only 2 pounds and was 14 inches long. He was truly a miracle baby, as the doctors told us if they had waited even an hour longer to deliver him, he would have been stillbirth. As he struggled in the NICU, so many were praying and we watched as the prayers were answered. When Joseph came home from the hospital, we noticed that he was not responsive as Andrew and my other children had been as a baby. He made no eye contact, did not respond to any sounds and could not even hold up his head or grasp a finger. We brought him to many specialists, who tried to rule out blindness and hearing loss. Eventually, Joseph began having seizures and was diagnosed with West Syndrome, a rare and catastrophic form of epilepsy. He was having more than a hundred seizures a day. We were devastated. I have never prayed so hard in my life. We watched as God performed another miracle and his seizures are finally under control. He is sitting up and starting to crawl and say words and eat solid food-things I feared we would never see. Joseph smiled for the first time at 13 months old and has not stopped since! He is truly a miracle and we are so blessed!

“Our boys have forever changed our lives for the better and we are so blessed and grateful.”

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Photo Credit: Tiffany Michelle Photography, LLC

Our prayer is that people would not be scared by a prenatal diagnosis of trisomy 21 or any other chromosomal abnormalities. These special children are truly gifts to be enjoyed and nurtured like all other children. Even with their unique challenges, they are children that need to be loved and want to give love to others. Our boys enjoy life to the fullest, especially the simple things. They like to do all the same things that other children do. They have taught us to live in the present moment. But, most importantly, they have taught our family that a person’s worth is not measured by how healthy they are or how perfect they look or how smart or talented they are. A person’s worth comes from the fact that they are created in the image and likeness of God, with unique gifts and a special purpose. Our boys have forever changed our lives for the better and we are so blessed and grateful.

2015 March for Life Theme

“Every Life is a Gift”

Op-ed in The Hill, “Every Life is a Gift,” by Jeanne Monahan.

Op-ed in Breitbart News, “March for Life: Every Life is a Gift,” by Bethany Goodman

Down Syndrome Awareness Month Briefing

March for Life Holds Policy Discussion on the Value of Every Human Life
Washington, D.C.—October is Down Syndrome Awareness Month, and The March for Life Education and Defense Fund will be hosting “Every Life is a Gift,” a panel discussion on how individuals with a disability live full and beautiful lives on Thursday, October 23, 2014 at the Capitol Visitor Center, HVC 201 from 12:30 PM – 1:30 PM ET. “Every Life is a Gift” will be the theme of the 2015 March for Life this coming January. Since developing babies who receive a difficult prenatal diagnosis (such as Down Syndrome, Trisomy 13 or 18, Spina Bifida, etc.) have a much smaller chance of being brought to term by their mothers and fathers, the March for Life Education and Defense Fund’s discussion will feature leading experts on cutting-edge research to improve the lives of individuals with disabilities and offer opportunities for a full life and improved support for their families.Speakers at the event include:

  • Jeanne Monahan, March for Life Education and Defense Fund
  • Mark Bradford, Jerome Lejeune Foundation
  • Chuck Donovan, Charlotte Lozier Institute
  • Dana Hecht, Family Relations Director, Jill’s House
  • Heather Trammel, Down Syndrome Society of Northern Virginia
  • Documentary Preview of “Flashes of Color,” In Altum Productions

The March for Life in Washington, D.C., began as a small demonstration on January 22, 1974, the first anniversary of the now-infamous Supreme Court decisions in Roe v Wade and Doe v Bolton and rapidly grew to be the largest pro-life event in the world.  The peaceful demonstration that has followed on this somber anniversary every year since is a witness to the truth concerning the greatest human rights violation of our time, legalized abortion on demand.

For more information, please contact Ryan Hughes at RHughes@SBPublicAffairs.com
or (703) 739-5920. ###

The Photo That Shocked The Nation

There has never been a better time in the history of the world for a person with a disability to be alive, yet, tragically, the vast majority of babies diagnosed in the womb with a disability are aborted.  Why are these babies not given a chance at life? Expectant parents and doctors have been convinced that children will have a “poor quality of life”, and rather than pursuing medical treatments and options, doctors recommend abortion as a solution. It is stunning that in 21st Century America, where modern medicine can grow new limbs and cure once incurable diseases, doctors and medical professionals too quickly turn to abortion as a resolution to a prenatal diagnosis of disability.

Thankfully, there are parents who refuse to accept abortion as a solution. In 1999, Julie and Alex Armas received the diagnosis that their preborn baby, Samuel, had Spina Bifida. However, Julie and Alex decided to fight for their son’s life. They qualified for an experimental pre-natal surgery at Vanderbilt University Hospital. At 21 weeks, Samuel was operated on in utero. That day there was a photographer was in the operating room, taking photos for a USA Today piece on pre-natal surgeries. The photo that was used in the spread sent shock waves around the world, and was dubbed “the Hand of Hope.”

The-Hand-of-Hope-72dpiThe photo displayed for the world, the humanity of the tiny baby in the womb, as well as the miracle of modern medicine!

When Samuel was born, the doctors and nurses were blown away by how well he did. It’s amazing what the love and persistence of parents who refuse to accept abortion as a solution can do. Today, Samuel is fifteen years old. His quality of life is anything but low.

Five years after Samuel’s very successful surgery, Julie Armas was pregnant with her third son, and again received a diagnosis of Spina Bifida. When Julie and Alex sought the same beneficial treatment that Samuel received, they were refused the surgery. Julie described the irony of the abortion culture: “I could choose to end his life, but I couldn’t choose to have a surgery that I had already experienced, that I knew would benefit him.” How tragic.

October is Spina Bifida Awareness Month, as well as Down Syndrome Awareness Month. I don’t think it’s a coincidence that it also happens to be the middle of a 40 Days for Life Campaign. It is time to move away from the attitude that babies diagnosed with disabilities are disposable. Society should no longer accept abortion as a solution for ending disabilities. Abortion can never be a solution, because abortion can only destroy. America, we can do better.

Watch the Armas Family’s Story here [130:00].