Tag: rare parenting reare

• I spent 6 years searching for a diagnosis

  

  For my 6 year old. As of today, I officially have one. It was given first back when she was a tiny baby in the NICU but I went into denial. She went through hell for over a year. She was in NICU for 8 months, had 4 surgeries (2 heart caths to close 2…

  The Dream Girl

  December 9, 2017

  Health, Parenting

  1P36, 1p36 deletion, 1p36 deletion syndrome, 1P36deletion, genetic disorders, I love someone rare, kids, Parenting, random thoughts, rare disease, rare parenting reare, rare syndrome, syndrome