Come meet many more
Trisomy 13 Survivors on the Trisomy 13 LIFE Patau Syndrome Group
Those with Survivors sharing Daily Trisomy 13 LIFE, milestones and accomplishments.
SOFT is the internet's most complete source of medical and family resources for trisomy 18 & 13. www.trisomy.org
Natalia Marie - Images
(top row) NICU - 11 days, Full trisomy13 Birth to 13 years (4 photo collage -with mold of hand before her extra digits (Polydactyly) were removed, 1 week old picture, Kindergarten photo, and Rainbow shirt standing at age 13.) 2 year photo sitting with some support.
(middle row) Natalia's first wheelchair for alignment 3 yrs old, Playing with her sibling, Gift of Time with Santa
(bottom row) 5 yrs using her reverse k walker with with guidance, 2014 SOFT Trisomy Awareness Shirt at 14 years, Walking and pushing her brother at the Annual SOFT Convention where 100's of Trisomy Families gather each year.
www.trisomy.org
Natalia's SOFT Story
Natalia's Trisomy Favorite Things BLOG - Flipcard design
Natalia was born in 2000. Thankfully she surprised us at birth with her Trisomy 13 symptoms. When given the trisomy 13 prognosis and trisomy 13 life expectancy, we chose trisomy 13 treatment which IS medical management with any medical condition which they would treat on a typical child. The trisomy 13 patau sydnrome malformations were done. Now we chose to pray and allow good medicine to help our child just as we would do for any of our typical children. Natalia was taken to NICU right after birth and given the appropriate care with the oxygen she needed for the first few days. We left home with a Haberman bottle feeding system for cleft lip and palate.
Back to the hospital at 6 weeks for a g-tube insertion, complete malrotation repair and the rest is history. ~ A Joy-filled life with this very sweet child.
Often families searching for support want to know what trisomy 13 life is like. What can they expect. Surgeries etc
. What kinds of surgeries did your kids need? And what is their functional status at their current age? Are they walking? Talking? Eating on their own at all?My reply back to one women was this: I want you to not freak out when you hear or see the list of things with these kids. For example my child is 15 yrs old. Can you imagine trying to list all the stuff for your typical 15 yr old. Bangs bruises, stitches. Emotional hurts etc. I can assure you I've said this to many others and others have also said this to me. I've raised 3 other typical kids and frankly they are more work than my trisomy 13 child. I just traded doc visits and therapy visits instead of ballet, soccer or volley ball games with this one child. Each child is so very different. You just take one day at a time just as you do with your other kids. You adjust along the way, just as you do with your other kids. There was no map or plan with my other kids. Months to years were a surprise. Same with these kids. Families want to know everything. Just do what you can, address issues as they come up, enjoy where you are at ~ at any given moment. You dont want to have spent your time worrying, wasting good moments worrying ... find the JOY in today, we never know what tomorrow will bring. Stay connected on a few facebook support groups ... this one Trisomy 13 LIFE, the SOFT group and if you find others where you are comfortable. I've found I can only follow a few just due to time.
#trisomy13 #PatauSyndrome #trisomy13LIFEexpectancy #trisomy13symptoms #trisomy13pictures #trisomy13prognosis #trisomy13symptoms #trisomy13treatment.
