Thanks for sharing my child's sweet four month old photo, (at 1:00) with the cleft-lip... While you cannot fix the Syndrome Trisomy13, you can in many cases treat the individual medical issues one by one. My child is now 11 yrs old. If you google "trisomy13archive" you'll read over 300 Unique Stories of families who've chosen to carry to term, some living hours and or months. SOFT at trisomy dot org has NEW Family Informational Packets also.
Actually, there is a woman living with Trisomy 13 that is 55 years old. There is another who is currently 36 years old. You can see their profile and a hundred more living examples at the trisomy-13 site
My son has Trisomy 13. He's just 3 months old, yet he can say I love you and hello. He's a cute and adorable baby. His doctor said that he would probably only live 2 months, yet he is going strong and we love him very much and thank God everyday that we have him in our lives.
its a good vid for trysomy 13, patau is hard for the parents, but i didint read or maybe you forgot to mention the hypotelorism of the eyes that can be fusioned into one, =) im studing to be a physician, and that so interesting =) btw thanks for the vid. its very ilustrated to people who are not involved in this middle
@lotharleopard As a Parent of a trisomy 13 child, I will share that its important for newly diagnosed families to meet and share with others who know this journey. Those who tap into the MANY online support resources have an easier time adjusting to the challenges that come day with these kids. Because t13 is rare, most Professionals have only seen a few within their practice. SOFT at trisomy (dot) org has NEW Family packets, Facebook and the trisomy13archive (dot) com resources help families.
@ThereseAnnM - one thing i would like to know, how did you deliver your little baby, by normal or csection and how far were you into the pregnancy? and how olde is your baby? thanks alot!
@frostie12345678 She was a scheduled c-section at 38 weeks "not knowing" she had full trisomy 13. I feel very Thankful/Blessed that I did not know prenatally of her genetic profile. She is now 11 years old and doing very well for a child Living with Full Trisomy 13.
thanks, that was very helpfull.
blisswest 2 weeks ago in playlist Medical Mysteries and Marvels
Thanks for sharing my child's sweet four month old photo, (at 1:00) with the cleft-lip... While you cannot fix the Syndrome Trisomy13, you can in many cases treat the individual medical issues one by one. My child is now 11 yrs old. If you google "trisomy13archive" you'll read over 300 Unique Stories of families who've chosen to carry to term, some living hours and or months. SOFT at trisomy dot org has NEW Family Informational Packets also.
ThereseAnnM 4 months ago
Actually, there is a woman living with Trisomy 13 that is 55 years old. There is another who is currently 36 years old. You can see their profile and a hundred more living examples at the trisomy-13 site
My son has Trisomy 13. He's just 3 months old, yet he can say I love you and hello. He's a cute and adorable baby. His doctor said that he would probably only live 2 months, yet he is going strong and we love him very much and thank God everyday that we have him in our lives.
giftshopping 5 months ago
@eLoHeLZzz14 by who?
1990Anavi 10 months ago
Whats the name of that song?
1990Anavi 11 months ago
its a good vid for trysomy 13, patau is hard for the parents, but i didint read or maybe you forgot to mention the hypotelorism of the eyes that can be fusioned into one, =) im studing to be a physician, and that so interesting =) btw thanks for the vid. its very ilustrated to people who are not involved in this middle
lotharleopard 2 years ago 5
@lotharleopard As a Parent of a trisomy 13 child, I will share that its important for newly diagnosed families to meet and share with others who know this journey. Those who tap into the MANY online support resources have an easier time adjusting to the challenges that come day with these kids. Because t13 is rare, most Professionals have only seen a few within their practice. SOFT at trisomy (dot) org has NEW Family packets, Facebook and the trisomy13archive (dot) com resources help families.
ThereseAnnM 4 months ago
@ThereseAnnM - one thing i would like to know, how did you deliver your little baby, by normal or csection and how far were you into the pregnancy? and how olde is your baby? thanks alot!
frostie12345678 1 month ago
@frostie12345678 She was a scheduled c-section at 38 weeks "not knowing" she had full trisomy 13. I feel very Thankful/Blessed that I did not know prenatally of her genetic profile. She is now 11 years old and doing very well for a child Living with Full Trisomy 13.
ThereseAnnM 1 month ago