@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 well I'm sure my twin brother, who also suffered from this condition, smiles in heaven every time expectations about the condition are changed.
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. :)
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 :)
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 :)
@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. :)
I am amazed at your patience and love for her. This is truly a miracle that she survived this diagnosis, and she is so happy! I am glad I watched this video, it made me smile :)
@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.
@wadyano Yes she amazes us daily :) She is now 10 1/2 years old and we are actually coming up to the June 2011 Special Olympics, maybe I ought to do another one of these.. :) we'll see If I can get it together :)
Hello to the parents of Natalia and Josiah, I am in awe watching the video. Your children are a miracle! But you already know that. But it is a daily miracle of achievements for them. When I was born, the doctors told my parents I would probably never walk or talk or live by myself. I battled blindness, epilepsy, and muscular dystrophy. I still do but I do all those things and more. I wish as much as is possible for your children. We are all blessings from God, at least I believe that. Goodluck.
@iHabika Thanks...she is such a sweetie. Just playing with her now, she has a real happy and joyful spirit. How much we would have missed out on in life if we had not had the experience of loving this special soul. She'll be 10 years in less than a month. (August 15th,2010)
We are all very excited... what a milestone she's accomplished.
Not a dry eye watching this beautiful moment. What a strong little heart this little angel has, I too have a daughter who is part patau syndrome and is 5 and a half years living. Such strong will she has the precious little one. God Bless her and her parents
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
ThereseAnnM 1 month ago
what do you think every time you bring your gorgeous daughter to doctors since the medical community deemed her condition "incompatible with life."
95n96girl 2 months ago
@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 1 month ago
@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.
95n96girl 1 month ago
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. :)
ThereseAnnM 2 months ago
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 :)
frostie12345678 2 months ago
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 :)
TheSmokin1 5 months ago 2
@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. :)
ThereseAnnM 4 months ago
I am amazed at your patience and love for her. This is truly a miracle that she survived this diagnosis, and she is so happy! I am glad I watched this video, it made me smile :)
ILUVHORSES1981 6 months ago
@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.
ThereseAnnM 6 months ago
@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! :)
ILUVHORSES1981 6 months ago
amazing. how old is she?
wadyano 11 months ago
@wadyano Yes she amazes us daily :) She is now 10 1/2 years old and we are actually coming up to the June 2011 Special Olympics, maybe I ought to do another one of these.. :) we'll see If I can get it together :)
livingwithtrisomy13 11 months ago
Hello to the parents of Natalia and Josiah, I am in awe watching the video. Your children are a miracle! But you already know that. But it is a daily miracle of achievements for them. When I was born, the doctors told my parents I would probably never walk or talk or live by myself. I battled blindness, epilepsy, and muscular dystrophy. I still do but I do all those things and more. I wish as much as is possible for your children. We are all blessings from God, at least I believe that. Goodluck.
SunandMarius 1 year ago
When she turned around and gave the lady who was helping her a hug whenever she accomplished something just made my day. She's adorable!
iHabika 1 year ago
@iHabika Thanks...she is such a sweetie. Just playing with her now, she has a real happy and joyful spirit. How much we would have missed out on in life if we had not had the experience of loving this special soul. She'll be 10 years in less than a month. (August 15th,2010)
We are all very excited... what a milestone she's accomplished.
livingwithtrisomy13 1 year ago
Not a dry eye watching this beautiful moment. What a strong little heart this little angel has, I too have a daughter who is part patau syndrome and is 5 and a half years living. Such strong will she has the precious little one. God Bless her and her parents
dask159 2 years ago