“She gave our family a new meaning of life connected spiritually and closer to god.”
Aerilyn Alexandra Colon, Trisomy 13 monosomy 15, 03/29/2014, Stewartsville, NJ
Our little Aerilyn is not the 1st or the 2nd child in our family diagnosed with this rare genetic condition she’s the 5th Trisomy 13 child in my family. At this moment 3 are still living ages 6yr boy, 4yr boy, and my Aerilyn 18months with two beautiful angels in heaven (girls 7yr. & 1yr old) all on my father’s side. Living proof that it’s more than just a random occurrence. At 28weeks the unexpected news of her medical diagnoses shattered our hearts. Having the this condition in our family didn’t make it easier or less painful we still had to battle the same pain many parents experience. Aerilyn was considered full-term born March 29th 2014 at 4lbs 3oz she was also born with a cleft lip & cleft palate. She had surgery soon after 4/7/2014 to place a feeding tube since her cleft palate was pretty wide and made it difficult for her to eat. Also had a patent foramen ovale (PFO) but it corrected itself with time! For the most part all her major organs are functioning normal. That’s why I was surprised that we weren’t given much hope by the medical professionals before they sent us home on hospice! No game plan or much help when discharge from the hospital. The first few months home was a crash course on how to care for a disabled child. The EMT paramedics got to know Aerilyn pretty well! (reflux, really scary apnea episodes, seizures, ec..) I fought for a year for her to receive the proper medical attention home nursing, medical equipment, therapy, and to see the right specialist. Aerilyn is a 1year 1/2 gained 17lb since birth and is doing very well! She loves to sing loudly and adores her big brother. Her favorite thing in the world is our ceiling FAN and her first & only word so far is “MAMA”. Aerilyn may not crawl, walk, stand, sit on her own, or talk yet but she’s A LOT more than just a diagnosis! She gave our family a new meaning of life connected spiritually and closer to god. We thank god every day for her and continue to fight by spreading awareness ..