Today is #rarediseaseday. My sweet Niko has the double whammy of Williams Syndrome and autism. Williams is a fascinating, intricate syndrome accompanied by physical and cognitive challenges, but also joy, curiosity, and so much love. We are better people and a better family because of Niko.
He’s a sweet, loving, curious 20-year-old boy. He still wants to sit on my lap. He asks me to tuck him in every night. He has problems with his heart, his eyes, his muscles, his voice, his speech, his arteries, and his blood pressure. He tells me every time the air conditioning or heat turns on in the church. He sleeps with two box fans, a ceiling fan, a sound machine, two air purifiers, his iPad, a keyboard, and his computer going. He never forgets a date on a calendar, and will remind you over and over and OVER (and over and over). He will remember the location of every laundry room in any house he’s ever visited. He’s beautiful, and he is a wonder.
Williams Syndrome is a genetic syndrome, not a disease, but I’ll take this day to help spread awareness.