Today I would like to introduce you to another special child who is living with Tay-Sachs Disease. Her name is Elise ten Berge and she lives with her mommy, daddy and little sister, Caroline in North Jersey.
Big Elise, as she is known in our Tay-Sachs family, was born on February 5, 2003. This makes her even more special because, you see, most children with this terrible disease do not live long enough to see their 5th birthday! She celebrated this huge milestone this past February 5th!
To celebrate this extra special day Elise's family threw her a tremendous princess celebration. She arrived in grand style in a white horse drawn carriage just like Cinderella! She was beautifully dressed in a homemade Cinderella gown made with love by her grandmother, long white satin gloves, perfect touches like blush and pink sparkle nail polish, a pretty necklace and of course, a tiara. As you know, this is a rare event for a child with Tay-Sachs to reach their fifth birthday. We know it was thanks to all of the love and care she receives daily. The news media was even there to capture the event! Her daddy made the most amazing cake for her and her little sister Caroline was the Belle of the ball! God bless her and her wonderful family!
You can see pictures from this special day here:
http://share.shutterfly.com/action/welcome?sid=0AasmbZozasWLGBA&emid=sharshar&linkid=link5
http://share.shutterfly.com/action/welcome?sid=0AasmbZozasWLGBA&emid=sharshar&linkid=link5
In November 2005 Elise's daddy, John had a tattoo of her done by Kat Von D, the amazing tattoo artist formerly from Miami Ink and now on L.A. Ink!
You can visit Big Elise's guestbook here:
http://www.caringbridge.org/visit/elisetenberge
There you can check out a picture of her daddy with Kat Von D by clicking on *see all photos or leave her an encouraging message or belated birthday greeting by clicking on *visit guestbook!
2 Add your Two Cents:
I was just going to tell you, I am a Pre-Med student and I was researching Tay Sachs Disease when I found your blog. I pray each and every day for everyone I can, but I know that I have special prayers for children like your daughter. This disease is fatal and it can break hearts. I hope your daughter is still doing well. :-)
Hi, hope you don't mind me writing to you, I lost my son in 1997 to Tay-Sachs disease, My heart is still broken, he was 4 weeks away from his 5th birthday. How I longed for that day to come round. I wish you all the luck in the world and hold you dear to my heart, you daughter has the same big beautiful eyes my son had.
He was my hero, stay strong x Jo x
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