Patau Syndrome Trisomy 13 Survivor - Living

http://tinyurl.com/trisomy13archive http://trisomy13archive.com
May 2007 Special Olympics District
Natalia ~ Full Trisomy13 (PatauSyndrome) Our Miracle in Progress http://trisomy13archive.com/albums/album14.htm
To view more T13 survivors - http://trisomy13archive.com/trisomy-13.htm

*Current Living with Trisomy 13 Patau Syndrome Support website http://www.trisomy-13.com
http://www.livingwithtrisomy13,org
*Global Trisomy Support
SOFT Support Organization for Trisomy 18, 13 and Related Disorders http://www.trisomy.org

Category:

People & Blogs

Tags:

• Patau Syndrome
• Patau's
• Trisomy13
• awareness
• Living
• Survivor
• Triumphant
• Unique
• Amazing
• anomalie
• trisomie 13
• genetic
• Special Olympics

[ThereseAnnM]

NIEW Trisomy Advocacy Group - Trisomy HELP

trisomyhelp (dot) org

SOFT Support Organization for Trisomy 18, 13 and Related Disorders

25 years Supporting Families

trisomy (dot) org

[95n96girl]

what do you think every time you bring your gorgeous daughter to doctors since the medical community deemed her condition "incompatible with life."

[ThereseAnnM]

@95n96girl Lol's I probably could write a book about office experiences. :) For the most part, we have a team of wonderful Doctors who I know help us look out for her best interest. I have over the years switched a few Specialists when I have felt we were not on the same page with the Medical Comfort, Therapeudic Intervention. I also think once you get past that first year...knowing you passed that milestone...thats a nice feeling.*Think I could write on book on some office experiences....

[ThereseAnnM]

I'm so sorry your precious child could not stay longer. Knowing prenatally,Had you already arranged photos with NILMDTS Photography? There are many Trisomy Support Resources. If you join now others who know your journey can help you through the many cycles of your grief journey.There is a wealth of support online. Each of these kids bring with them many blessings. While your child is not here. He will inspire you to do more. These kids touch and heal hearts. Listen to the whisper. :)

[TheSmokin1]

Hi I just wanted to say how your video has touched my heart. While doin a research paper on trisomy 13 I stumbled on your video it made me cry and made me smile. Its amazing to hear that she is 11 now and is attending the 6th grade. Thanks for your video it really did touch my heart :)

[ThereseAnnM]

@TheSmokin1 Thank you for your kind comment, I'm glad you found the video and I hope the resource links helped you find some added Trisomy Resources and Information for your Research Paper. We have Archived the Original Trisomy13 site just this last month. I've added the new links to the info under the video. Blessings and Thank You again. :)

[95n96girl]

@ThereseAnnM well I'm sure my twin brother, who also suffered from this condition, smiles in heaven every time expectations about the condition are changed.

[frostie12345678]

Gave birth to my trisomy 13 baby 4 weeks ago,i got at the hospital he had heart beat,but doctors has never agreed in performing a c cection,his heart beat started to have probs and they still didnt' want to perfome a c cection, my angel was born by a normal delivery but he was sleeping :( i wonder if he was born by a c cection he might have survived for a few hours,days or maybe a few years,i will never know! i only know that i LOVE HIM SOM MUCH, he is with Jesus,and is now my gardian angel :)

[ILUVHORSES1981]

@ThereseAnnM

I am so glad to hear she is doing well and is going into the six grade! That is amazing in of itself! :) Rock on Natalia! :)

[ThereseAnnM]

@ILUVHORSES1981 Thank you Horse lover ;), Natalia was able to walk the entire event this year, She'll be 11 yrs old next Friday :) - It easy to have patience with her. Her demeanor is much like a child at the age of 8mo to 15months. Natalia will always have that innocence that we love with toddlers. Just as you adjust your life with the needs of a baby/toddler, we too adjust with each moment and day to her needs. Its been a great year for her. She'll be in 6th grade special day class this fall.