I have a 22-year-old-daughter with a Translocation Trisomy which consisits of part of the long (q) arm of her 13th chromosome and part of the long (q) arm of her 15th chromosome. Rebecca is a source of great joy in our lives and is a joyful person all around. Rebecca was born in a very large city hospital in the USA with several anomalies consistent with a syndrome – mishapen skull, “funny-sounding” heart, an extra toe, large “strawberry” hemangiomas, low-set ears, clenched fists, etc. She was not; however, diagnosed at birth with a syndrome, and I had refused the AFP test during pregnancy. As a result, all of her anomalies were addressed with needed tests, treatments, therapies, and/or surgeries. The LORD addressed the heart problem with healing!

Currently, Rebecca is ambulatory and verbal, reads on about a 5th-grade (or better) level, writes very well, calculates, tells time, and is comfortable microwaving foods, making sandwiches, cereal, and other simple meal preparation and clean-up. She loves church and very much enjoys attending a twice-weekly social group for higher-functioning young adults with special needs, as well as bowling and playing baseball on special needs’ teams.

Her story is posted at http://www.livingwithtrisomy13.org along with the stories of many beautiful children and adults with various forms of Trisomy 13, including many with Full Trisomy 13. The oldest person on the site with Full Trisomy 13 will soon be 27-years-old , and the oldest person with Partial Trisomy 13 is 49-years-old. There are also individuals with Mosaic Trisomy 13. The site has a Treasured Memories Album for children and adults who had Trisomy 13 and have passed away.

All of these children are beloved by their families. They recognize family members and most have attained further milestones with the love and commitment of family and, often, therapies of various kinds. I always tell people Rebecca’s latest choice of her favorite praise and worship song, because the choices never cease to amaze me and are a reflection of her heart. The most currently shared favorite goes like this: “LORD, I offer my life to You. Everything I’ve been through; use it for Your glory. LORD, I offer my days to You, lifting my praise to You as a pleasing sacrifice. LORD, I offer You my life.”

See also Dick Sobsey’s previous post on this at What Sorts, written in June just after the Canadian Pediatric Society’s journal, Pediatrics and Child Health, published Farlow’s commentary, over here.