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Living with Trisomy 13 - Patau's Syndrome

Nicholas Alexander Wright

 

Born: April 6, 1995 

 
Illinois Chapter SOFT Inc is an Illinois based all volunteer not for profit organization. Our goal is to support families with children that have a chromosome disorder called  Trisomy 13, Trisomy 18, or a related disorder.

Hudson, Illinois (IL) - Full Trisomy 13

Nicholas Alexander Wright was born full Trisomy 13...He goes to school full time and can walk in a walker (more so at school than at home). He pushes switches at school to communicate (although I don't know if he knows what he's trying to say with the switch). He loves musical toys. Nick also loves to pull hair! He sat up at age 2 and crawled at age 3. He can pull up to standing and cruise furniture. Nicholas has never been a good sleeper. (just like the other Trisomy 13 children!). Mark & Jayne Wright, Hudson, Illinois

Click here to E-Mail  submitted: 11-18-04

 
 


15 months


3 years old


8 years old

Nicholas Alexander Wright was born full Trisomy 13 (4/6/95). He has had 2 sets of ear tubes, both eyes reconstructed for missing lacrimal ducts, sinus surgery, Nissen fundolplication (for reflux), g-tube at age 6, Ladds procedure for malrotated bowel, several abdominal hernia repairs, groin hernia repair and testicles brought down. He has had an MRI and has no holoprosencephaly. He has a slight heart murmur but otherwise his heart is in good shape. He has never had pneumonia. We are currently monitoring cysts on both kidneys. His doctor doesn't think it's polycystic kidney disease, but we are checking every 6 months to see if they grow.

Nicholas eats by mouth but doesn't take a sippy cup so I have to thicken all his liquids and give it to him on a spoon. The little stinker won't take anything unless it's on a spoon! He used to drink a bottle and then at age 4 he just quit cold turkey. All his food must be pureed. He goes to school full time and can walk in a walker (more so at school than at home). He pushes switches at school to communicate (although I don't know if he knows what he's trying to say with the switch). He loves musical toys. Nick also loves to pull hair! He sat up at age 2 and crawled at age 3. He can pull up to standing and cruise furniture. Nicholas has never been a good sleeper. (just like the other Trisomy 13 children!)

Mark & Jayne Wright,
Hudson IL