Sapphire staff in Kabuki Syndrome T shirts

October 23, 2022 is National Kabuki Syndrome Awareness Day.  This year, Sapphire Elementary School honored this rare disease on Wednesday, October 19.  In support of Monroe-Woodbury Occupational Therapist Crystal Cardone, whose five year-old daughter Ashlyn was diagnosed with Kabuki Syndrome at 5 months old, Sapphire faculty and staff wore "Answers for Ashlyn" shirts and the color green to symbolize our support of the Cardones and all those who are impacted by this rare condition.

Ashlyn is a very happy little girl who loves to play, swim, engage in imaginative play, and play with her sisters. She is extremely self motivated and determined, and will practice something until she gets it right. She has received therapy since she was 2 months old. Ashlyn has had to overcome so many obstacles and continues to do so with a smile on her face. She is an amazing little girl and such a big fighter. 

Kabuki syndrome is believed to affect 1 in 32,000 individuals. Kabuki syndrome is a rare congenital disorder, meaning that a child is born with the condition. Children with Kabuki syndrome usually have distinctive facial features, mild to moderate mental impairment and growth problems. Kabuki syndrome can also affect many other body systems, including the heart, intestines, kidneys, and skeleton.  Ashlyn has spent over 110 nights in a hospital since being born and has over 12 specialists that she sees regularly.

Sapphire proudly represents Kabuki Syndrome Awareness and all those affected by this rare congenital condition.