Tuesday, March 20, 2012

Day 20 of 21 Words for 21 Days


“The genetic makeup of a human being is complete from the moment of fertilization: not a single scientist doubts it. What some of them want to debate is the amount of respect due to an individual based on her stage of development. If a human being is a half-inch long, does she deserve respect? If she is 20 inches long, does she deserve 40 times more? People who use years and pounds to quantify the respect due to another human being are not well intentioned.”

Servant of God, Dr Jerome Lejeune

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Monday, March 19, 2012

Christina's tenth birthday celebrations


Chrissy and Grandpa. 

Bella and Gabbi having fun.

Ten years never flew faster than this decade of my youngest daughter's life. Ten years when she taught her family to love with a more intense love, celebrate with a greater joy, and laugh heartier laughs. To notice the daffodils budding, the sunshine in the trees,  and watch the bluebirds flying overhead. She turned up the volume on our thanksgiving prayers, gave us the gift of patience, and made us into activists.
Christina has given me the courage to finally begin that writing career, and this week, my book "A Special Mother is Born"  will be on sale in the United Nations Bookstore!
Thank you to my funny, musical, loving daughter with the extra chromosome, thank you from the bottom of my heart. You are the song in my heart!
Birthday party at home

Birthday party at Grandpa's house

You can't miss a farmer at heart!

Christina likes to play school in the schoolhouse. 

A lovely 1830's family!

Christina loves the cooper's workbench!

Always the daddy's girl!

We learned it takes 40 gals of sap to make one gallon of syrup!

Aunt Mila and Daddy love Christina.

Riding a HUGE sheep!

Break from walking is time for a hug!

Daddy and Uncle Manuel love Christina. 

Lovely sunshine!

They saw fish swimming against the current. 

The family had a wonderful time!

Christina loves sheep!

Her sisters made amazing cupcakes from "Despicable Me"

The dynamic duo, Chrissy and Mary!







To celebrate Christina's ten years, we all spent a sunny, warm spring day in Old Sturbridge Village. Its a peaceful place, where she knows the way around and happily visits her favorite sites, the schoolhouse, the cooper's workshop,  the barnyard, and, of course, the candy shop!

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Day 19 of 21 Words for 21 Days


“Ending an inconvenient life is a terrible thing. And age is no protection against this threat: the elderly are as much at risk as our youngest children.”

Servant of God, Dr Jerome Lejeune


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Sunday, March 18, 2012

Day 18 of 21 Words for 21 Days


“To avoid overheating the debate, I will go much further back—to the Spartans, the only ones to eliminate newborns that they believed would be unable to bear arms or beget future soldiers. Sparta was the only Greek city to practice this kind of eugenics, this systemic elimination. And nothing remains of it; it has not left us a single poet, not a single musician, not even a ruin! 

Sparta is the only Greek city that contributed nothing to humanity: is that a coincidence or is there a direct correlation? Geneticists wonder, ‘did they turn stupid because when they killed their future thinkers and artists when they killed their less-than-beautiful children?"
 Servant of God, Dr Jerome Lejeune

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Saturday, March 17, 2012

Day 17 of 21 Words for 21 Days


“We need to be clear;
the quality of a civilization can be measured by the respect it has for its weakest members.
 There is no other criterion. “

Servant of God, 
Dr Jerome Lejeune


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Friday, March 16, 2012

Day 16 of 21 Words for 21 Days


“The enemies of life know that to destroy Christian civilization, they must first destroy the family at its weakest point—the child. And among the weakest, they must choose the least protected of all—the child who has never been seen, the child who is not yet known or love in the usual meaning of the word; who had not yet seen the light of day; 
who cannot even cry out in distress.”

Servant of God, Dr Jerome Lejeune


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Thursday, March 15, 2012

Day 15 of 21 Words for 21 Days


“People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!’ It cannot be denied that the price of these diseases is high—in suffering for he individual and in burdens for society. No to mention what parents suffer! But we can assign a value to that price: it is precisely what society must pay to be fully human.”

Servant of God, Dr Jerome Lejeune


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Alberto Costa: Breakthroughs in Down Syndrome Research



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William Mobley: Breakthroughs in Down Syndrome Research

Wednesday, March 14, 2012

Day 14 of 21 Words for 21 Days

“In modern democracies, which no longer refer to a higher moral law, upright citizens have an innate duty to aspire to laws that reflect what they believe to be best for society, and the only freedom they still possess.”

Servant of God, 
Dr Jerome Lejeune


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Tuesday, March 13, 2012

National Alzheimer's Project Act should include Down Syndrome

As some of you know, NAPA (National Alzheimer Project Act) was signed into law by President Obama in January 2011. The project is divided into 3 areas, research, clinical care, and long term care. NAPA does recognize that Alzheimer’s disease is more common in those with intellectual disabilities, but does not address the very close relationship between DS and AD. Congresswoman McMorris Rodgers would like to remedy that.
NAPA will be having a Teleconference Advisory Council Meeting tomorrow from 1 till 5 PM. The chairs from all 3 subcommittees (Research, Clinical Care, and Long term services) will be present.

I know of two people who will be speaking to the group. One is a sibling of a man who had DS and AD and has passed away. The other will be reading a letter from some in the DS research community (letter embargoed until the meeting). The gist of the comments are that NAPA has omitted Down Syndrome as a specific group with an exceptionally high risk of Alzheimer’s and that DS should be included, specifically, particularly under goal 1 of NAPA (research to prevent and effectively treat Alzheimer’s disease by 2025).

The public may attend the Teleconference by clicking this link.
HHS is seeking input on the draft plan through March 30, 2012. The Congresswoman is submitting a letter and I hope each of you will as well. Inclusion of DS, specifically, in the National Alzheimer’s Project Act will clearly benefit DS. It will most likely benefit others as well.

Karen L. Summar, MD, MS
Joseph P. Kennedy Foundation Public Policy Fellow
Office of Congresswoman Cathy McMorris Rodgers
2421 Rayburn House Office Building
Washington, DC 20515Bookmark and Share

Day 13 of 21 Words for 21 Days


“Fertilization outside the body—making a child without making love-- and abortion—the unmaking of a child—are incompatible with natural moral law in varying degrees.”
Servant of God, Dr Jerome Lejeune

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Monday, March 12, 2012

Day 12 of 21 Words for 21 Days


“It is not medicine we should fear, but the folly of mankind. Every day, the experience of our predecessors increases our ability to change nature by using its own laws. But using this power wisely is what each generation must lean in its turn. We are certainly more powerful today than ever before, but we are no wiser; technology is cumulative, wisdom is not.”
Servant of God, Dr Jerome Lejeune


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Sunday, March 11, 2012

Day 11 of 21 Words for 21 Days

Christina Maria's First Holy Communion August 2010

“At universities, I have often seen extremely intelligent people holding conferences, nodding as they considered whether their children were some sort of animals when they were very young. But at the zoo, I have yet to see a conference of chimpanzees consider whether their children would grow up to to be college professors. “
Servant of God, Dr Jerome Lejeune

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Saturday, March 10, 2012

Day 10 of 21 Words for 21 Days

Christina with Gabbi at the computer

“The absolute superiority, the complete novelty of humanity, is that no other creature can experience a kind of complicity between the laws of nature and its awareness of its own existence. The ability to admire exists only in human beings. Never in the history of gardening have we seen a dog smell the scent of a rose. Nor has a chimpanzee ever gazes at the sunset or the splendor of a starry sky.”

Servant of God, 
Dr Jerome Lejeune

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Friday, March 9, 2012

Day 9 of 21 Words for 21 Days

Chrissy with Grandpa and Bella in 2008

“We will beat this disease. It’s inconceivable that we won’t. It will take much less intellectual effort than sending a man to the moon.”

Servant of God,

Dr Jerome Lejeune

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International Down Syndrome Coalition for Life WDSD March 21, 2012

Thursday, March 8, 2012

Day 8 of 21 Words for 21 Days

Gabbi, Bella and Chrissy last December. 
“I see only one way left to save them, and that is to cure them. The task is immense, but so is Hope.”

Servant of God, 
Dr Jerome Lejeune

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