Hi, Meet Little Miss Aerilyn! She is 9yr old, hair bow loving Diva, living with a very rare genetic condition called Trisomy 13 also known as Patau syndrome. Trisomy 13 is a genetic disorder in which a person has an extra 13th chromosome. This rare genotype anomaly causes severe birth defects and global developmental delays. Only 10% of the children diagnosed with Trisomy 13 make it to birth -while 2% live through the first year of life before succumbing to the severity of illness. Because each chromosome contains hundreds of genes, the “addition’ (Aerilyn’s extra 13th chromosome) -or- “Loss” of even a single chromosome disrupts the existing equilibrium in her cells -therefore this genetic disorder was labeled “Not Compatible with Life.” “Imagine receiving that type of diagnosis during a 28- week ultrasound of your child in utero?” As her parents we were absolutely crushed under the weight of this devastating news. The medical literature painted a very daunting and dismal outcome for our daughter Aerilyn. Against the advice of many physicians, we decided to push through and fight for our child Aerilyn.
Despite the overwhelming challenges and uncertainty presented by this life changing diagnosis, the only option we had was to anchor ourselves in our faith and our love for God. “And that is the honest truth!” -God and Aerilyn had the blueprints “for her life’s purpose” and this glorious medical journey ready-to-go as soon as she landed on soil. Like a force of nature! Aerilyn tackled through some heavy hitting challenges involving countless procedures, severe illness, and life-threatening medical issues. Even physical limitations have not stopped Aerilyn from achieving major life goals (didn’t think it could be possible). Like “Walking” with a robotic gate training system and “Riding a tricycle” just to name a few. Aerilyn is an absolute joy and a hilarious character! With her Iconic resting “facial expressions” of disapproval. She has inspired so many people around the world who follow her journey to believe all things are possible! Even the collection of 200 hair bows! March 29th, 2024, Aerilyn will be celebrating her GREATEST milestone, “Aerilyn’s 10th Birthday!!”
The Shannon Daley Memorial Fund has been an absolute blessing in our life! With the help and support of their fundraising event, our dream to build an accessible bathroom for Aerilyn is coming TRUE! THANK YOU, SHANNON DALEY MEMORIAL FUND we are incredibly excited, to be a recipient of your kindness & wonderful cause.