Today is Rare Disease Day. Williams Syndrome.

My sweet Niko has Williams Syndrome and autism. Williams Syndrome is an intricate syndrome caused by the deletion of the elastin gene on the seventh chromosome. This spontaneous deletion on one tiny gene has the ability to dramatically change our lives.

He’s a sweet, loving, curious 19-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, 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. <3

For more information on Williams Syndrome, please visit

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