By Trinity’s family
Trinity is 11 years old with the mosaic nipbl gene, tested negative on blood but positive on mouth swab.
Trinity has a 5-year-old sister. They have a good bond, although Trinity scares her sometimes when she tries to be aggressive.
What advice do have for other parents?
That you may feel like days that youre not doing enough but I will guarantee that you’re doing the best you can. Also most pediatricians do not know about CdLS and to grab a packet of information to give your pediatrician, I had to do that with mine and I also had to advocate for Trinity when she was little due to bullying at the gastrointestinal doctor’s office about her weight from a nurse practitioner when her weight was fine according to the chart for CdLS.
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