Today is Trisomy 13 Awareness day. March because it is the 3rd month of the year and trisomy stands for 3 copies of a chromosome. And the 13th because that is the chromosome that is affected in Trisomy 13 or Patau Syndrome. March 13th also just happens to be the day that I went into labor with Reese, who was born 2 years ago tomorrow, with Trisomy 13.
I have always wanted to do more to help educate people about this disease. Don and I are still working on some of these ideas. In the mean time, I thought I would use my blog and facebook to help bring some awareness today.
Trisomy 13 is the presence of an additional 13 chromosome. Having a third (extra) number 13 chromosome, occurs about 1 time in every 5,000 live births. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate and many more, including even more severe issues. Because of the many abnormalities, all of these children are survivors if they reach their mothers arms. They are true miracles of life. Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months. Sadly, many of the children with Trisomy13 (Patau Syndrome) do not reach their first birthday. If you would like to learn even more about Trisomy 13, please visit http://www.livingwithtrisomy13.org/index.htm. Don and I leaned on this site nearly every day while we were pregnant with Reese.
Reese's memory page is on this site as well - http://www.livingwithtrisomy13.org/MemoriesOfReese.htm.
Also, here is a link to a news broadcast where Don and I were asked to talk about Reese and Trisomy 13. http://www.ktka.com/news/2007/jul/12/losing_infant_rare_disease_parents_want_help_other/
Recently Alaska governor, Sarah Palin, signed a proclamation stating that March 2009 would be Trisomy Awareness Month. Here is a copy of that proclamation - http://www.gov.state.ak.us/proclamations.php?id=1676.
My goal on this March 13th is to spread awareness of this rare diagnosis. By increasing awareness, I feel I am keeping my baby's memory alive. I know Reese's life had a far greater purpose, and maybe this was part of it.
Mommy loves you Reese.