Trisomy is a genetic condition in which there are three copies of a chromosome, instead of the usual two. Down syndrome is one kind of trisomy involving a third copy of chromosome 21, but many other gene pairs can also be affected. March is Trisomy Awareness Month, but for a Verona family and their friends every day is about awareness because of a little girl they know and love.
Paityn Haley Nigro, the little girl in the photo above, was born with Trisomy 13 syndrome, a condition that occurs in approximately 1 in 10,000 births. The extra thirteenth chromosome can cause a range of health problems to the eyes, the heart and internal organs, and many children with Trisomy 13 do not survive past birth or infancy.
But Paityn now attends the P.G. Chambers School and her parents, Janice and Anthony Nigro and her three sisters and two brothers are very proud of her. So is her godmother, Danielle Dennis. “She loves Mickey Mouse and the Disney character Sofia the First,” says Dennis. “She has a contagious laugh she is loved so very much by my family.”
What can you do about all this? There are other Verona children with health conditions and in some cases, like that of Zoey Penny, scientists are beginning to envision ways of helping them. There is no current cure or prospect for a cure for trisomy, but through Trisomy Awareness Month, SOFT, the Support Organization For Trisomy tries to help the general public understand the condition, and the issues that parents who have been given a diagnosis of trisomy face. Many of the family stories that have been posted to SOFT are about children who have only lived for a few days or weeks. SOFT does accept donations to fund research studies related to Trisomy, support for parents and other things. You can learn more about it here.