Trisomy 13 Awareness

March is Trisomy Awareness Month, and today, March 13th is Trisomy 13th Awareness Day! Don’t know what Trisomy 13 is? Most of us have 2 copies of 23 different chromosomes making up our DNA. A trisomy occurs when there’s an extra copy of one of those chromosomes. Down Syndrome is Trisomy 21 (a third copy of the 21st chromosome is present). Trisomy 13 occurs when a third copy of the 13th chromosome is present. The majority of parents who find out that their unborn or newborn baby has Trisomy 13 are encouraged to terminate the pregnancy, or to withhold potentially life-saving interventions from their babies after birth and let them pass away. Trisomy 13 babies have been labeled “incompatible with life” by the medical community for decades. BUT, because of progressive medical care professionals and a proactive approach to her health, local toddler Avonlea Powell just turned 3 years old on March 4th, despite having Full Trisomy 13! She is proving that Trisomy 13 is not always a death-sentence, and that life with this condition can be beautiful and full, and she is not the only one! Search #trisomy13 to see plenty of these amazing kids beating the odds. Their parents often have to search all over the country to find doctors who will provide their child with surgeries or other medical care because of this harsh stigma of “incompatible with life.” Avonlea’s family is on a mission to raise awareness, and the empower the public with knowledge so that parents who receive this diagnosis in the future can receive the compassion and quality medical care that they and their babies deserve! Avonlea’s mommy has a blog: www.lovingavonlea.com, and a non-profit foundation has been started in her name to continue to raise awareness, and hopefully change the way so many doctors approach and treat Trisomy 13.

I met Avonlea’s mom, Melissa through a wedding industry networking event a few years back. Her and her husband Brian are the team behind Project Life Photography. They were photographing an event that I was providing desserts for, and immediately upon meeting them I felt such a warmth and kindness that radiated from the both of them. I remember Melissa sending me pictures just a few days later of my dessert display from that evening. Something that might seem small, but as bakers we rarely get professional shots of our work, so it was beyond appreciated!

Melissa has been very open and candid ever since her daughter Avonlea was diagnosed with Trisomy 13. I appreciate her raw truth. In return I have learned so much simply from what she continues to share on social media. By sharing their story I know they are helping so many others in this community. Whether it’s families who first hear these words in an ultrasound room and are our trying to understand what their future will look like. Or for the families who are searching for newest and best treatment for their children who are living with Trisomy 13. Awareness I believe is essential, shining a light on something that is misunderstood or seems taboo to talk about is so important. So although many of you are fortunate enough that this topic isn’t a part of your everyday lives, I urge you to share this. Not only can empathy be discovered when we share the struggles of others, but also a real change can happen too.

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