March is Trisomy Awareness Month
When most people are born, they have 23 pairs of chromosomes for a total of 46 chromosomes. For those born with a trisomy condition, they have an extra chromosome in most or all of their cells, for a total of 47 chromosomes. While trisomy can occur with any chromosome, the most well-known syndromes are:
- Trisomy 21: more commonly known as Down syndrome
- Trisomy 18: also called Edwards syndrome
- Trisomy 13: also called Patau syndrome
PHS patient Lucas, who is thriving at home at 12 years old, has Trisomy 21, Hirschsprung’s Disease and short bowel syndrome – but there is so much more to him than these diagnoses.
Catching Up With Lucas
At just six days old, Lucas had most of his large intestine removed. At four months, he had a large portion of his small intestine removed. He was in critical condition and there was a doubt that he would live more than 24 hours.
“PHS met us at the hospital when we first took Lucas home,” his mom Julie explains. PHS helped her prepare the house and achieve consistent care. You can learn more about the beginning of their journey in this video:
Today, PHS manages Lucas’s nutrition through TPN, feedings, and works on infection control to keep him healthy. Regular lab draws ensure he’s staying on track. This active boy loves playing basketball and baseball (see him in action on the baseball field in the picture to the right), loves eating Goldfish, and school.
Do you have a child with a trisomy condition? Tell their story in the comments! We love to read about these amazing kiddos and their incredible journeys.Originally published: March 13, 2014