By Quinn’s family
Quinn is 11 years old and has an SMC3 mutation that has never been documented in anyone else, she is unique.
She loves cats, music and her “annoying” older brother, Donovan. She has many challenges but is always improving when she has the right support. The biggest challenges for us have been getting her the scaffolding in public school, and getting family supports from the government, like respite and aftercare help.
Photo Credit: Sam Murphy
She was diagnosed with CdLS less than a year ago due to the medical center not following up on the more subtle clues.
I had suspected she had a syndrome of some sort, but assumed it was rare or not-studied. It was a large-scale ASD genetic research study (SPARK at Stanford) that found the gene, and informed us of CdLS.
Photo Credit – Sam Murphy
Quinn deals with ASD/ADHD & sensory issues.
She is extremely active and sensory-oriented.
She used to have sleep problems, but now mostly just struggles with eating, she is still under 50lbs.
She learned how to read a little later than others, thanks to intensive private dyslexia interventions. She loves school, reading, and art. She is in General Ed with a 1:1 paraprofessional, and we held her back a grade after the pandemic shut-down, to catch up with reading.
She is in 4th grade, and is now one of the best readers in her class, she works very hard.
She speaks Spanish & English, although she struggles with speech.
She is learning guitar in private classes at her own pace. She loves dance and is taking a group Capoeira class with 2 other neurodiverse friends. She is super fun to take on a bike ride, peddling hard up hills in the park on her cool BMX, impressing others because she is so little.
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