We are celebrating by wearing purple and we’d love to highlight an amazing mama in the CDLS community, Lisa, and her daughter Lauren. From Lisa:
“I'd like to introduce you to my little Lauren! Lauren is 8 years old and has Cornelia de Lange Syndrome (CdLS). There are 7 known gene mutations that cause CdLS and Lauren has the most common one, NIPBL, which happened spontaneously at conception.
Those with CdLS are chartered on a specific CdLS growth chart because they are so small, slow growing, and don't reach normal height/weights. Like many of her CdLS brothers and sisters, Lauren is non-verbal but between learning some sign language, her communication app on her iPad, and just general communication with pointing or bringing something she wants to you, she is an excellent communicator! We continue to be blown away by what she knows and understands.
Lauren has had two major surgeries in her past. At 5 months old she had spinal surgery for a tethered spinal cord, and when she was 3 she had surgery to help alleviate chronic UTIs.
Otherwise, medically for Lauren her two biggest issues are severe reflux and stage 3 kidney disease. Both are monitored closely and managed with medication at this point.
Most importantly though, Lauren is a happy, silly girl who loves to laugh, her older brother, the iPad, water play, playgrounds, and eating!”
To learn more about CDLS, visit https://www.cdlsusa.org/ and @cdlsfoundation and consider supporting this cause!