Good news on the Down syndrome research front

This is from Peter Elliot of the Down syndrome Research Foundation

• . There has been some very successful research in 2010 that you may not know about. The Optima Team at Oxford published the results of a 2 year RDB project that tested a medicine of folic acid+B12+B6 at a high dose rate to prevent the loss of brain tissue seen in patients with early onset dementia. After 2 years everyone on the medicine saw a benefit compared to those on the placebo. Adults with DS are at high risk of dementia and this happens much sooner. I have been talking to this research team and they have agreed to help design a medicine for our children and this will target a correction to the biochemistry caused by trisomy 21. The objective is a nutrition based medicine that prevents problems and allows more normal growth and development. We can now see the genes that are effected by Trisomy 21 so we can also see when they are being corrected. This is amazing technology. This research should be underway in 2011 and we will be needing parents who have a young child with DS and a near same age and same sex normal sibling to volunteer to donate small blood samples for this genetics and biochemistry research project. I need the names now so we know where you are and you can email me at dsrf_uk@yahoo.com. The project will be based in Europe but we have close ties and a collaboration with leading researchers in the USA. DSRF-USA is a new registered Non Profit in Texas and will be linked to DSRF-UK through our fundraising and website activity. Nothing happens until the parents get involved and I am just ONE parent. Now is the time for you to get involved. Information on this technology will be posted on our website next month. How is the DSRF-UK and the DSRF-USA different from all the other DS organizations? We are proactive and we seek out the best research, we dont have any paid employees and we dont assume someone is going to help our children and come knocking at our door. We find the best researchers and we ask for their help and we offer to help them. We Collaborate and support the programs that can find very safe medicines. Medical research to find the medicine that will help our children and transform their lives is our objective. Show your support and send a donation from our website and write to me and volunteer for research. A lot of work lies ahead but the researchers have agreed to help us. Now its your turn. Peter Elliott - Research Director - DSRF-UK / DSRF-US
• 
  

Christmas 2010

We spent Christmas Eve enjoying a traditional Polish Christmas Eve dinner at the Bothurs's home (you know Kristin from 11 On My Own). The meal was outstanding; mushroom soup, codfish, homemade potato and onion pierogies, poppyseed cake, deviled eggs, beets with horseradish, egg noodles, and shrimp cocktail. We played Christmas carols and enjoyed each other's company.  As if anything could top this, it would be Holy Mas which we attended at Midnight at St Mary's parish where Gabbi and I sang the Mass of the Shepherds, Ave Maria by Tomas de Vittoria, The Coventry Carol, Adeste Fideles, and Joy to the World.
It was a Christmas Eve I will always remember for the fellowship and sheer spiritual beauty. I will be incorporating ideas from Fr Tito's impressive homily into my post on tomorrow's Feast of the Holy Innocents.
Christmas day started a bit late, but the children eventually got us out of bed. I remember 13 year old Bella flinging herself on our bed yelling "ITS CHRISTMAS!!!" By tee time I lumbered downstairs (remember my back was still in spasm since Thanksgiving), the fire was blazing and I was given the most comfortable chair to enjoy the view of the children's joyful opening of gifts. First we placed Baby Jesus in the manger, and thanked Him for His birth, then the frenzy began. I'll let you enjoy the sights rather than describe them.
Dinner was made entirely by the teenagers since my back was getting worse; ham, green beans, squash, mashed potatoes, rolls, topped off by coconut custard pie.
We visited our friends the Dudas,  for caroling and a rich variety of snacks and dessert, and realized that we have finally established ourselves at home in Connecticut, where we feel part of the community in every respect. God has truly blessed us.

God bless us, every one!
 

My Christmas card is coming!

I am a little late this year, my back is still in spasm, but the girls managed to put together a wonderfully artistic, yet deeply religious Christmas card this year. For those of you who won't be getting it, the interior of the card has the lyrics of "O Holy Night", followed by "The Velasquez family wishes you a Blessed Christmas"

Christmas gifts for your family

I have been trying to catch up on my book reviews. Here are two reviews of books which would make wonderful Christmas gifts; for moms, Mother Teresa and Me: 10 Years of Friendship by Donna Marie Cooper O'Boyle.
For the children in your life, I recommend, The Star of Christmas and the DVD A Christmas Carol.
I'm working on a suggestion for Dads, stay tuned.

"the Good of Society" vs the good of the mother

When a PhD student at the University of Victoria in New Zealand did a study on women's opinions on pre-natal testing, she was surprised by what she found. Pre-natal screening of unborn babies for genetic defects like Down syndrome have become an accepted practice in medicine. But Dr Donovan, a Sociologist found an important distinction; accepted by whom? The medical establishment or the pregnant women themselves? In this she found some surprising disparities.

There is an unrecognised tension between how screening is understood within the medical profession and how it is experienced by pregnant women themselves. The public health sector endorses screening which is seen as a health good and an economically useful approach.

"Medical literature often presents the reduction of Down Syndrome as a desirable public health goal. However, I found this is not necessarily in line with the views of 'ordinary people' on what is good use of health spending.

Here's the crux of the issue;  'public health goals' are being imposed upon women without their knowledge or informed consent. They are not being made aware of the potential miscarriages with amnio, the possibility of mis-diagnosis, or what to do if an anomaly is discovered. This is the case in every nation with a 90% abortion rate for Down syndrome, the mothers are pressured to make a decision as soon as a diagnosis is given, with only negative counseling. They are not given time to think, do research or get to know women who are raising children with Down syndrome. Public health goals are imposed upon women and they are starting to rebel.

Dr Donovan believes more public debate is needed on the wider issue of giving birth to children with disabilities.

"The medical profession might seek to decrease incidence of conditions such as Down Syndrome but we don’t know what the general public thinks.

"There are actually a range of views out there including women who believe families should have the right to give birth to a disabled child and not be discriminated against for their choice."

Read more here. 

My Christmas picture cards

Thanks to Hallie Lord's helpful post at Faith and Family Live, I discovered Shutterfly's  offer of 50 free Christmas cards for bloggers(sorry, registration is now closed, remember this for next year).
 It was good news, at a time when I was about to give up on getting Christmas cards done. Last year I didn't even get to it, and since I moved many of my friends don't have my address, this is a great way to send it to them. I still have their cards up on my kitchen cabinets from last year, I couldn't bear to take them down.
This is my first non-media product endorsement,  I can sincerely recommend these cards, since I have made my Christmas cards over at  Shutterfly before (see the upper left photo of the girls,  surrounded in blue).
I found them on my own a few years ago, when Shutterfly was one of the few make-a-card sites where you could get a good assortment of religious photo-card templates. 
We just took about a dozen pictures of the girls in their Mass clothing and are trying to select which one of the 37 religious templates to use. We took photos in black and white, sepia, and in color, on our staircase, adorned in garlands. I am trying to decide between this template and this one. 
It depends on which photo we choose as the winner.We can use a group shot or break up the shot into individual portraits. This might work where you have a good shot for the older girls,  but  with a restless little girl like Christina, you can count on shots where she is a blur!
I'll post a copy of the card when its done.

Sign up for webinar update on targeted Down syndrome reading study

Remember the targeted reading study I told you about last October which is taking place in Portsmouth and York in the UK? I posted about it here. 
 It is a custom designed reading program for children with Down syndrome and is being field tested in these cities before date is collected and the materials are marketed to schools worldwide. Sign up here for a free webinar to learn about the amazing progress these students are making at Downs Ed International.

 No worries if you can't; I'm  registered and will be reporting on it here.

Lady of the Roses (English)

Please join us in prayer for my Aunt Teresa

She may be going to Jesus tonight, and has received he sacraments, we are prarying the Divine Mercy chaplet to pray her home. Please pray for her, and join us in this meditative song about Baby Jesus coming down from the stars to shiver in the cold for love of us.

Have abortions of babies with Down syndrome gone down?

Christmas has just come early for me. This is what I have been working on for four years since I became a freelance writer in earnest; to lower the abortion rate (and raise the birth rate) of children with Down syndrome.
This article seems to confirm my dearest hopes; to save our precious children from death.

The study indicates that there are about 6,000 diagnoses of Down syndrome each year in the United States. One in every 691 babies is born with Down syndrome. This is an increase from the previously reported statistic of 1 in every 733.

This is a small increase of 42 more babies with Ds born each year. We are moving in the right direction!
Thank you, baby Jesus!

Has your Advent been sidetracked?

Advent is a challenging time to be prayerful and meditative.Sometimes as I said in my Catholic Mom post, its creeping commercialism which invades our homes, but sometimes its more serious matters
 I spent last week bedridden with back spasms, but thanks to having set the stage in former years, my teens know the drill. They played St Nicholas for Christina, bought my Advent candles (white this year), set up the manger,  and  the Jesse Tree. When I was able to get out of bed, Advent was already in progress. The gift I have been giving my children in a holy Advent is beginning to produce returns. Thank you, Baby Jesus!

Last night we attended a beautiful Mass of the Immaculate Conception and enjoyed peppermint hot cocoa and brownies in honor of Our Lady.

Danger and Opportunity

The Chinese character for "crisis" is a mixture of the characters for "danger" and "opportunity". So, when my life felt endangered this week, by an mole in my eye, God, in His mercy turned it into an opportunity. An opportunity to appreciate my life as never before.
I thought I was over the "it can't happen to me" attitude when I had a daughter with Down syndrome, something that happens in about 1% of births to women in their thirties. I know it can happen to me. I have two friends, Lisa and Pat, who are breast cancer survivors, and one, Mary, who wasn't. I, like Mary,  can die in my late forties, if God wills it.
But still, I was taken aback when, last June, the opthamologist told me I could have a uveal melanoma in my right eye, right near the optic nerve, and that removing it which might be necessary to save my life could destroy the vision in that eye. I was paralyzed with fear, in my bed, watching my life pass before my eyes.
It took the prayers of my little saint, and many of you to get me back on my feet. Then a check up at Massachusetts Eye and Ear Infirmary told me it wasn't cancerous. Yet. I made an appointment to return December 6 relieved that the spot wasn't cancer but wishing to be done with this threat on my life. It was not to be.
Yesterday, on St Nicholas Day, Francisco took me into Boston and the re-check was good news, the 'freckle' has not changed. Yet I was dismayed to hear that I'll be doing this for he rest of my life, visiting Boston every six months for intensive and expensive eye examinations. This spot could change and threaten my life or vision at any time. It was hard to accept, even in the midst of gratitude for a reprieve. And a reprieve it is. For now. So I returned home with a renewed appreciation for the gifts I have been given. The gift of family, the gift of beauty around me, the gift of faith. Appropriate for the feast day of a man whose legacy is intertwined with gift giving in the Christmas season.
We ate lunch in the hospital cafeteria, overlooking Cambridge on the Charles River, eating hot chicken soup mindful of the icy winds whipping up waves on the water below.  Navigating through the city to the Mass Pike, I pointed out places the girls and I had enjoyed dinner, the preview of "Voyage of the Dawn Treader" or hors d'oeuvres with the Catholic New Media Celebration. Boston is a city with happy memories. I realized that it had been far too long since my husband and I were together in a big city. When we were single, Francisco was obtaining his green card at Immigration in Lower Manhattan, which brought us there a few times. Just before Christmas in 1991,  we picked up my engagement ring at a Cuban jewelers on Canal Street. He didn't put in on my finger in the store, he waited until we were in the multilingual bustle of a cafe in Little Italy. He slipped in on my finger, and, to his horror, the conversation halted; all eyes turned on us as smiles turned to applause. It was one of the highlights of my life, and walking homeward through Little Italy, as huge soft snowflakes fell, I felt as though I could fly.
Yesterday was just as magical. Driving home through the Connecticut countryside, we took scenic Route 169 past prep schools on rolling hills, past dairy farms and quaint antique shops, and though it was sunny, snowflakes filled the air. I was playing Christmas carols in the car, it was another moment of perfection in our lives as we planned when to buy our Christmas tree, and whether to have an open house with our neighbors for Christmas. We surprised Christina by picking her up at school and she yelled, "Daddy" and threw herself into his arms. Her entire class greeted her as they filed by, and we arrived home to a roaring fire and contented family.
Mom was going to be all right, for now.
Life is good. Life is very good.
Deo gratias.

My column at the Ethiopian Review

Yes, you read that right, the Ethiopian Review. I did a double take myself.
Someone there is a Catholic, because, for the second time, my column at Catholic Mom has been copied and reposted there.
How do you say Merry Christmas in Ethiopian?

Darlene Wagner is a Catholic hero

I nominated Darlene for Catholic hero at Catholic Digest for her pro-life work at Birthrght, Ave Maria Home, and the Face of Pro=Life. She's been helping pregnant women since Roe v Wade.
Read the article in Catholic Digest.

A Day of Recognition for parents of Special Needs Children

from our friend in Congress, Rep Cathy McMorris Rogers:

3 December 2010 

Dear Friend,

I wanted to take a minute to tell you about a very important piece of legislation that I co-sponsored, which passed the House yesterday. This resolution, H.Res.1576, would establish a National Day of Recognition for Parents of Special Needs Children. I joined with 41 of my colleagues in a bipartisan way to highlight the importance of recognizing parents of special needs children. I am pleased that this legislation passed with such overwhelming support, and I am excited to continue fighting for this cause as your Member of Congress.

As a mother of a special needs child, I can say without a doubt that my son Cole has given me an entirely new perspective on life and has reshaped my purpose for being in Congress. More than that, though, he's given me the opportunity to meet and work with so many otherparents of special needs children – parents who have selflessly dedicated their lives for the betterment of their children. It is these parents who have opened their hearts and shared their lives in order to pave the road to a better and brighter future for Cole and other children.

Everywhere Brian and I go, we meet families who share with us their stories about a loved one with special needs. They all speak passionately about the positive impact that their children have on their lives. These are the parents who have helped Brian and me see the positive impact that Cole will continue to have on our lives and the world.

It is with tremendous pride that I recognize the parents who dedicate their lives to improving those of their children. While the passage of this legislation is extraordinarily exciting, it is just the beginning. I will continue to work tirelessly as a leader in the Congressional Down Syndrome Caucus and as your Representative in Congress. 

When a writer has a special needs child

Read this remarkable story about a Nobel Lauraete and his autistic son.
 When we say 'no' to the challenge of a special needs child, we have no idea the gift we are refusing.

New Zealand parents speak out against genocide of babies with Down syndrome

from Contact Genetique, an email newsletter of the Fondation Lejeune

"Screening for Down syndrome is genocide"

A group of parents with Down syndrome children from Right to Life, a New Zealand pro-life organisation, are threatening to take the government to the Court of Human Rights over its Down syndrome antenatal screening programme, introduced by the Health Minister in February 2010 without public consultation.

The parents claim this screening programme discriminates against people with Down syndrome as it violates article 2 of the UN Convention on the Prevention and Punishment of the Crime of Genocide by imposing measures intended to prevent births within a specific group of human beings. Article 2 of the Convention defines genocide as an act committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group as such by imposing measures intended to prevent births within this group.

The parents argue that people with Down syndrome constitute a stable and permanent group who are genetically related through the possession of a third chromosome on the 21st pair and who also share the same physical characteristics. They can therefore be defined as an ethnic group. The presence, form, presentation and management of this antenatal screening programme "sends a clear message to people with Down syndrome that their lives are not valued and reinforces discrimination towards them", they said.

The health ministry documents state that this programme will reduce the number of Down syndrome births; 90% of these babies are aborted.