Commemorating Rare Disease Day: My Storybook Project

Today, February 29, is Rare Disease Day.

Before December 19, I hadn't given much thought about rare diseases. But that day, we were thrown into the world of Harlequin Ichthyosis...and since then, our lives have revolved about this disease and its affect on our little girl.

In honor of Rare Disease Day, I want to share about a very special project I've been involved with recently and to ask for your help as the project moves into the final stage. When Brenna was a couple of weeks old, a friend shared on twitter about an organization called MarbleRoad, which raises awareness about rare diseases, and a "contest" they were doing called the Rare Children's Storybook Project. The focus of the project was to compose a story involving a rare disease...and then chosen finalists would be asked to create an accompanying video.

At first, I didn't think I had time to devote to writing a story in a matter of days. But one afternoon, I spent a few hours alone with Brenna at the hospital, and when I came home, the story just poured out of me. I wanted to write something for her and to her, so that she would know how we felt about her birth and her presence in our lives.

This is my video, sharing the story of Brenna's birth and our journey as a family over the last couple of months. Below, you'll find my story, which was written for the 0-5 age range (and you can read the stories of the other finalists in the storybook gallery here.)

The winner for this project (who receives some money for medical costs and is considered for publication) is chosen based on the number of views, comments and "likes" on the video, so I would really appreciate you all taking the time to watch my video and read my story about our sweet girl!

For You, We Prayed

Daddy and Mommy knew something was missing in our family

We said, “We need a little girl to love.”

So we prayed and prayed,

Asking God to send us an angel from above

“And not just any little girl, Lord.

We want a baby as precious as can be.

We want to give her hugs and kisses,

And make sure that she’s happy.”

“I have a very special baby girl,” God said to us.

But she will need more care than other babies do.

Her skin will be very different,

And her ears and eyes too.

She will need lots of understanding and time from you

Sometimes she might be very sick.

But the laughter and joy she has to share

Are truly heaven-sent.

I need to find parents for this special girl whom I can trust.”

We said, “Please God, choose us!”

We told him, “We have so much love to give

And happiness to share.

We know this perfect child

Is the one we have been praying for.”

“Bless us with this child,” we implored.

“We trust your plan for her, oh Lord.”

God smiled and said he would grant us this great blessing.

Your condition at birth was just as he said.

But we have faith in his plan

And the journey on which we’re being led

On the day you were born

And every day since,

We have thanked God

For our very special gift.