Kristina Rachel

Kristina Rachel

  Our daughter Kristina was born with the rare condition known as Trisomy 18 or Edward’s Syndrome. In simple terms this means that Krissy has three number 18 chromosomes. Sadly, many babies with this syndrome do not survive to birth. Of those that survive only about 10% of them live to celebrate their first birthday.…Continue Reading

Krissy’s Story, the story of a beautiful girl beating the odds and Living with Trisomy 18!

Our daughter Kristina was born with the rare condition known as Trisomy 18 or Edward’s Syndrome. In simple terms this means that Krissy has three number 18 chromosomes. Sadly, many babies with this syndrome do not survive to birth. Of those that survive only about 10% of them live to celebrate their first birthday. Krissy…Continue Reading

The Tracking Rare Incidence Syndromes (TRIS) Project

The Tracking Rare Incidence Syndromes (TRIS) Project

This is a replay of a webinar aired on Februay 27, 2013 11:00 am – 11:45 am Dr. Debbie Bruns discusses the TRIS Project. What it is, why it is and how much your input matters! To enroll your child in the TRIS Project follow this link: http://web3.coehs.siu.edu/tris/PreEnroll.php To learn more about the TRIS Project…Continue Reading

I Am Not a Syndrome – My Name is Simon!

I Am Not a Syndrome – My Name is Simon!

TrisomyTalk.com welcomes Trisomy mom Sheryl Crosier, author of “I Am Not a Syndrome, My Name is Simon.” Join us as Sheryl shares her family’s Trisomy Journey with her son Simon who was diagnosed at birth with Trisomy 18, also known as Edward’s Syndrome. She will introduce us to her incredible son Simon, share with us…Continue Reading

Tarsorrhaphy

Krissy is a 12 1/2 year old girl with Full Trisomy 18. Recently she underwent a surgery called a “Tarsorrhaphy” (tahr-sor´ә-fe) which in simple terms is where they stitch all or part of the upper and lower eyelids together to protect the cornea. Krissy needed this because she doesn’t blink enough and often sleeps with her…Continue Reading

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