|
Be notified when this page is updated
|
|
|
|
|
|
~~~*** Happy "51st" Birthday to
Lynne King
***~~~ Monroe, Washington (WA) - Partial Trisomy 13
Age 51 years old!! She is a long-term survivor. We believe Lynne
is the Oldest Partial Trisomy 13 living today. |
|
Current
LWT13 Community Prayer Requests and Needs |
|
TAKE ACTION! |
|
 NEW
Trisomy
13 - Patau Syndrome NEWS BLOG Updated daily with Related Trisomy 13 - Patau
Syndrome NEWS, Article and Events - stay up-to-date and informed! Add and Share
YOUR Blog Button
 NEW
- FACEBOOK Trisomy 13 - Patau Sydnrome NEWS
 Follow
us on Twitter PatauSyndromT13
|
Celebrating MARCH as Trisomy Awareness Month
(March 13th as Trisomy13 Awareness Day)
The LWT13 community supports
Ironmanforkids
TRISOMY AWARENESS Active Giving program. |
|
Celebrating Trisomy Awareness Month Friends of Sam help
raise money for a tandem bike. Friends of
Sam help raise money for a tandem bike |
|
TATERADE.COM
Fundraising:
Giving Back 10% to Trisomy 13 Kids!
Helping children
with Trisomy-13, All Natural, Healthy, Electrolyte, Juice.
|
 Learn
sign language....one sign a week.
A NEW SIGN each Tuesday |
 Support
Ironman For Kids -
Bringing Hope ~ Celebrating Life
Michael Hennessey–husband, father, regular
guy with a zeal for the Lord, Ironmans across the globe for Trisomy Awareness!
IronmanForLife.com Blog Roll |
|
add a badge
to your blog or website
to link to this site
<a href="http://LivingWithTrisomy13.org" target="_blank">
<img border="0" src="http://LivingWithTrisomy13.org/lwt13badge.gif" width="150" height="155"></a>
|
Please join us in praying at 3:00 pm (central time) for our beautiful children
affected by trisomy 13 |
|
NEWS HIGHLIGHTS
Click
here for all the latest Trisomy 13 news articles and stories in
Newspapers, TV, Videos, Blogs |
|
NEW In The
NEWS BLOG Updated Daily with Related Trisomy 13 - Patau Syndrome NEWS,
Article and Events - stay up-to-date and informed! |
|
Marathon team isn’t looking for a cure... Just acceptance This was the first
race for which
Trisomy
Life brought runners from all over the world including Quebec and Germany
together to run for trisomy awareness ...
 |
Tracking Rare Incidence Syndromes
August, 2009: Trisomy 13 survival data
As of August 1, 2009, 145 Full TRIS Surveys were completed (children
living longer than two months). Of the total, 44 children had a type of
trisomy 13 (30.3%) including 25 full, nine mosaic and 10 partial. At the
time of survey completion, 30 children were living (68%) (mean = 100
months, range two to 405 months). The remaining 14 survived between two
to 290 months (mean = 64 months) (32%).
The Modified TRIS Survey collects data on infants who survived less than
60 days. Of the 122 completed surveys, 74% represented infants with
trisomy 13 (n = 90; 89 full, one mosaic). Close to half (43%) were
stillborn or passed away during labor and delivery. The next largest
group (n = 10) survived for three days post-birth.
BE SURE TO REGISTER your child’s Trisomy information with TRIS |
Landmark study sheds new light on human chromosomal birth defects
EurekAlert (press release) - Washington,DC,USA
... that include Down, Edwards, Patau, Turner, Klinefelter's and XYY
syndromes. ... and can cause human chromosomal birth defects such as
Down syndrome, ... |
Pre-natally and Post-natally Diagnosed Conditions Act Signed into Law by
the President
Victory in Washington - The Trisomy 18 Foundation applauds the final
passage of the Pre-natally and Post-natally Diagnosed Conditions
Awareness Act (S. 1810). The Act, signed into law by President Bush on
October 8th, ensures that families who receive prenatal diagnoses of
Trisomy 18, Trisomy 13, Down Syndrome or other genetic conditions will
have access to up-to-date information about the nature of the condition
and connection with support services and networks that could offer
assistance.
BROWNBACK, KENNEDY INTRODUCE PRENATALLY DIAGNOSED CONDITIONS AWARENESS
ACT
U.S. Department of Health and Human Services HRSA Health Resources and
Services Administration |
|
More... |
|
MESSAGE FROM THIS
SITE'S FACILITATOR |
Hello Families...
Texas here we come...we’re going
to
SPIN to JOY!!
 First, I'm thrilled to be heading down to Texas this
Friday... (in 2 days) to stay with Kristi Poulin and to meet
her family and Sofia
I'll
be attending the 1st
SPIN to JOY event that our awesome Michael from
IRONMAN
for KIDS is putting together. They have also informed us
that they are going to present Natalia a Tandem bike! I'm
thrilled for many reasons. One, it will be a great way to
get up, out and enjoy life again with Natalia along with us,
and it will also be a great way for her to also get some
exercise as her peddles move along with mine. When she is
tired, I am able to disengage the peddling on her end. So
its a win, win for both of us. Often as these kids get
older, if not using their legs, they tend to atrophy...
Having a bike like this will help both of us to get the
suggested exercise that everyone and typical kids/families
enjoy.
My intention is to have an event locally to raise funds and
get some of these tandems on the OC Beach Boardwalk!! Maybe
you’d like to also do this in your area?
Often our LWT13 Families want to know how they can honor
their child's life. In memory or donation. I encourage you to
consider a donation to the Ironman for Kids Foundation an
official 501(c)(3) tax-exempt organization. Helping them to
continue their work on behalf of trisomy families. You might
also connect with Michael on how you can host an event to
raise Trisomy Awareness in your area as well as raising the
funds to add one of these amazing tandems to your local
parks and recreation area for the special needs families in
your area.
SPIN TO JOY
Blessings,
ThereseAnn, mom to Natalia
|
|
Don't Miss!! |
|
Prenatal Diagnosis Information
Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
|
Quotes |
"Diffabilities ~ different abilities, not wrong, not less than,
not lacking, just uniquely different. Wonderful differences that
this world has yet to discover the true value of "
~ Carolyn Prothero"The only disability in life is a bad
attitude."
~Scott Hamilton |
Site Updates:
July 2, 2010
June 2, 2010
May 30, 2010
May 26, 2010
May 5, 2010
April 30, 2010
April 27, 2010
April 24, 2010
- New memory album added for
Kailynn Renee Davis.
previously on our prental album page, who lived her life in 17
hours.
- New photos added for seven month old Naiyah
April 22, 2010
April 21, 2010
April 10, 2010
April 3, 2010
March 31, 2010
March 24, 2010
March 15, 2010
- Update and photos added for three and a half year old
Evan Cotter
March 14, 2010
March 13, 2010
March 8, 2010
March 6, 2010
March 3, 2010
- Extended to March 10 - Please consider
purchasing a shirt in memory of our daughter
Fia. March in
Trisomy Awareness month.
Many times there are needs that insurance companies do not
cover..in our case they wouldn't cover Fia's hospice care. This
can put a HUGE burden on parents and families that are beating
the odds of a diagnosis of Trisomy disorders and making the most
of their prognosis. Fia had Trisomy 13,
click here to read Fia's story
February 21, 2010
February 10, 2010
February 9, 2010
February 8, 2010
February 7, 2010
January 29, 2010
January 5, 2010
January 3, 2009
January 1, 2010
December 30, 2009
December 10, 2009
- New memory album added for
Angel Gumataotao, previously on our
prenatal page, who lived her life in 17 short hours.
November 26, 2009
November 23, 2009
- New memory album added for
Henry David White, previously on our
prenatal page, who lived his life in 15 minutes.
November 19, 2009
November 17, 2009
November 13, 2009
November 12, 2009
- New 4d ultrasound photos added to
Niles Cooper's prenatal page
November 10, 2009
November 8, 2008
- Memory album for Grace Shedd,
previously on our prenatal page, still born October 15th.
November 7, 2009
November 6, 2009
- Memory album added for Lily Ann
Hudson, previously on our prenatal album page, who lived her
life in 16 hours 6 minutes. Don't miss the beautiful video
and photos.
- Update and prayer request added for
Henry David White,
Due: January 28, 2010, who will be born this Monday!
- Update and photos added to seven year old
Eleora Toomey's album
November 4, 2009
- New album added for two month old Naiyah
November 3, 2009
- New album added for two year old
Ádám Bíró
- Family update and video montage added to
Karrae Hatton's memory album
October 31, 2009
- Please keep all of our trisomy children and families in your
prayers. Especially Arianna, Phoebe, Grace, those who are
presently ill with the flu.
- Message from grandmother added to
Alyssa's memory album
-
Misgivings
New article by By Barbara Farlow, mom to Annie
© 2009 The Hastings Center, Reprinted by permission. This article originally
appeared in the Hastings Center Report, vol. 39, no. 5 (2009): 19-21
October 27, 2009
October 19, 2009
October 17, 2009
October 16, 2009
- New misdiagnosed album added for 7 year old
Alexis Reeping
Misdiagnosed with Mosaic Trisomy13 in utero - and born healthy!
October 10, 2009
October 9, 2009
October 8, 2009
October 4, 2009
September 26, 2009
September 24, 2009
September 23, 2009
September 20, 2009
- New urgent prayer
request for Naiyah and mom Stephi - please keep them in your
prayers. Little Naiyah is still in the hospital. Naiyah will be
added to this site soon.
September 18, 2009
- New memory album, update and photos added for precious
Karrae Hatton, previously on our
prenatal page, stillborn on September 15
- New memory album added for treasured
Neysia Blaze Wilson, who
lived her life in 5 short days.
September 17, 2009
September 14, 2009
September 13, 2009
September 12, 2009
September 6, 2009
September 3, 20099
- Update and photo added to Karrae Hatton's
prenatal album - Dad is home from Iraq!
September 2, 2009
- New memory album for
JayLynn Burbidge added, previously on our
prenatal page, who lived her life in 2 Hours
September 1, 2009
August 26, 2009
August 24, 2009
August 18, 2009
August 9, 2009
- New memory album for Josiah
Scott Morash, previously on our prenatal page, who live his
life in less than one day, surrounded by family.
August 8, 2009
August 7, 2009
July 28, 2009
July 27, 2009
July 24
- Update and urgent prayer request added for
Baby Hatton and her family
July 15, 2009
July 14, 2009
July 12, 2009
July 10, 2009
July 3, 2009
- New prenatal album added for Baby
Hatton, due: Oct 11, 2009
June 29, 2009
June 28, 2009
- Link added to right under Take Action to vote on beautiful
photo of Luke
June 25, 2009
June 24, 2009
June 22, 2009
June 18, 2009
June 17, 2009
June 15, 2009
June 14, 2009
June 13, 2009
June 12, 2009
June 10, 2009
- New album added for Georgia
Slaymaker, previously on our prenatal page, born June 1,
2009
June 8, 2009
June 3, 2009
June 1, 2009
May 25, 2009
May 24, 2009
May 23, 2009
May 19, 2009
May 14, 2009
May 13, 2009
Georgia Slaymaker from Geelong, Victoria, Australia, due:
June 23, 2009
May 12, 20099
- Memory album added for
Elijah Thomas Wilson, previously in our
prenatal album, who lived his life in 58 Minutes
May 10, 2009
May 4, 2009
April 30, 2009
- New memory album added for
Evelyne Sofia Gordon, previously on our
prenatal page, who lived out her life in 13 days!
- New memory album added for
John-Robert Martin who passed away
at 4 Years, 4 months
April 28, 2009
April 27, 2009
April 20, 2009
Previous Updates >
|
