Compatible With Joy-Trisomy18: Alayna's Angel Day -- Hope Lives On

Wednesday, May 2, 2012

Alayna's Angel Day -- Hope Lives On

Sweet Alayna Hope

Almost one year ago, a beautiful little girl from Eagle Mountain, Utah passed away. Like Aaron, Alayna had full Trisomy 18. Because one or the other always seemed to be struggling, they never got to meet in this life, but I spent time on the phone with her mom, met her family, and they came to Aaron's birthday party.

Alayna's dad and siblings with Aaron
and some of my kids at the movies.

Alayna's mom and siblings at Aaron's
birthday party.

Alayna blessed her family with 160 days of love. To remember her, they are promoting a "Hope Lives On" party. Alayna's middle name is Hope and this is a wonderful way to continue her legacy. It's really easy. Each day try perform a random act of kindness (or two) and post it on her facebook site by clicking on the link or her name below her picture. They want to have 160 acts of kindness each day between May 1 and her angelversary on May 18.

I know that when I talk to a mom with an angel, her biggest fear is always that her child will be forgotten. Let's help the Abbott family pass on Alayna Hope's legacy. What are you going to do?

The picture they gave us for
Aaron's 1st Birthday.
We CAN do hard things, but this one
is easy. What are you going to do to
brighten someone's day?

(If you don't have a facebook account, or have trouble going there, you can post it here and I'll make sure they get it.)

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What is Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is where a child has three of the 18th chromosome. Most people have two of each chromosome, one from mom and one from dad. In a trisomy, the child gets two of one chromosome from one parent and one from the other. Think tricycle, three.

Imagine if you made a batch of cookies and it called for two cups of sugar. Sugar is good, it's necessary for the cookies to turn out the way you expect them to. But instead, you put in three cups. You then proceed to mix and bake the cookies.

They're not going to be the way you expect, and it's the same way for that extra chromosome. Our bodies don't "read" the code well when there's an extra portion added in, and it causes all kinds of complications.

But just like "typical" children, there is a wide range of abilities and challenges for children with a trisomy. Many of the anomolies occur along the mid-line: the brain, the mouth (cleft lips and palates) the heart, lungs, diaphragm, and kidneys. Some are more severe than others.

Each child is unique, each is special. I like to use the sugar in my analogy because each one child is so sweet. In our home, we say that the 18th chromosome holds the secret to love. Aaron got an extra love chromosome, and he uses it to bless our lives.