Tulsa mom encourages awareness of rare disorder

Collaborator: Brittany Harlow
Published: 06/18/2020, 10:16 AM
Edited: 03/11/2021, 10:22 AM
(TULSA, Okla.) “Today would have been Scarlet’s second birthday.” Tulsa resident Morgan Mancuso said this year she is celebrating her daughter’s birthday like any other mom. “Today, I break my no drinking streak to raise a glass and make a toast to her special day,” Mancuso said. But in many ways, she’s not just like any other mom. Two years ago, Mancuso’s daughter passed away from Trisomy 13 after living just three days. According to the National Institutes of Health, Trisomy 13 is a type of chromosome disorder typically characterized by having 3 copies of chromosome 13 in cells of the body, instead of the usual 2 copies. Experts said due to various life-threatening medical problems, many infants with Trisomy 13 do not survive past the first days or weeks of life. The disorder occurs in about 1 in 16,000 newborns. But aside from life expectancy, when the anomaly occurs and how it occurs, researchers still don’t understand the why. That’s why Mancuso said more research about the rare disorder is essential. “When I found out she only had a 10% chance of survival, and that it’s a rare condition, my initial thought was to donate her body to research,” Mancuso said. “However, in the state of Oklahoma and a lot of other states, even as the parent, you cannot donate a body under the age of 18. The hospitals won’t even make a transfer where it is legal. “Trisomy babies only have a 10% chance of survival in the first 2 weeks. Most only make it a few days. Even with a mosaic gene the individual usually doesn’t make it to teen years. The research that is out there is all we have to understanding what it is.” Mancuso said she finds comfort in knowing her young daughter was able to save another child’s life by becoming an organ donor. “While I have only three days of memories with her that will last a lifetime, there’s a child somewhere out there walking around with her heart and there’s something truly beautiful about that,” Mancuso said. Prenatal testing and screening exist to determine if a current pregnancy is at risk for, or is affected by, Trisomy 13 or other chromosome disorders. Find more information here: https://ghr.nlm.nih.gov/condition/trisomy-13 To donate to Trisomy 13 research, click here: https://trisomy.org/donate/


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