Our Sunshine: Demi’s Sweet Sixteen


by John & Jolanda

Our daughter is turning 16 years old.  It seems like yesterday when we first saw our little Demi.  Your road wasn’t easy for you or for us, but you are the most important person in our lives and many others.

You’re an inspiration for us and we learn almost every week from you.  You are our sunshine and you still amaze us.  You are so happy, strong, and enjoy life; even when doctors gave up, you didn’t.

You were diagnosed in 2014 with NGLY1 Deficiency and since then we have gained a lot of wisdom about your disability thanks to the Grace Science Foundation.  This organization is so amazing for you and all the kids with NGLY1.

This picture of a couple of years ago is how you still are…naughty.  You can’t speak with words, but you express yourself through your face.  Your laugh kills us every time.

We can understand from your facial expressions when you’re thinking about doing something.  You pull your face in a strange way and then we see you’re up to something.  You love horse riding and sometimes you’ll pull at the horse’s mane.

This year was a tough year when we almost lost you, but even then there was our strong daughter.  We had the chance to go to Disney in Paris due to the Make a Wish organization.  We all needed it as a family.  There we saw how you discovered your hand and that you have fingers.

Eating, music and hugging are your favorite things to do.  You have thin arms,  but when you give us a hug we must watch out for breaking our necks!  When we’re about to eat, you compare what others have on their plate to make certain there is no disadvantage.  Dessert is your favorite moment of the meal. If we’re walking to the fridge, you know dessert is coming. The person with the dessert will be followed until they arrive at the table.

The song “Music was my first love” by John Miles is appropriate for you.  It makes no difference which year a song was composed, it is the tone to which you react.  If you have pain, we give you music and most of the time you’re soon smiling.

Dear Demi, please be our sunshine and have a Happy Birthday!  Until your 17th Birthday…

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