Letter to Emi: 4/10/06

Dear Emily,

I was there the very second your mommy found out that you were coming. She was so silly...I had to remind her a plus sign means a BABY is on the way! For the next 9 months, we waited and waited for you. We tried to be as patient as possible through your mom's long pregnancy.

Finally, your day arrived; you were born on 2/3/06. You put your mom though a very difficult labor, but it was so worth it! You were so beautiful. You didn't cry and yell loud like we expected...but came out with a little cry and were content to lay sleepy on your mommy.

It wasn't until about 18 hours later when you still lay sleeping that we started to think something was not quite right. You had to go down to the Intensive Care Unit away from your mom and all of us who love you! Boy, was that hard. Those days are a blur of tests and worry and no sleep. The doctors really did not know or say much about what was wrong. They threw all kinds of possibilities at us, like brain damage, a possible stroke, SMA...the list was endless and so scary.

Thank goodness those diagnoses were proven incorrect. After 11 days in the NICU, you were able to come home. You could hold your body temperature, drink a bottle all on your own, and you even were starting to move around a little bit! Your mom was running around the house, getting things ready....she was so excited for you to come home. We all were!

In the meantime, the hospital had taken a blood sample from you. They were testing you for Prader-Willi syndrome. We did some research...but not too much. Your first test came back negative. We breathed a big sigh...of relief...but also of confusion? What could be wrong if not that? But the doctors quickly told us that there was still another test pending. We were not out of the woods yet.

For the next 7 weeks, we prayed and prayed. Maybe you were just delayed. Maybe the low muscle tone would improve. You were doing great- gaining weight and moving around. You started your therapy with Elaine from Birth to 3. And you were gorgeous. All this blonde hair and dark blue eyes. We all fought over who got to hold you longest. Then the call came. Your methylation test had come back positive. Prader-Willi Syndrome was the diagnosis. We all cried. Not "Why us?" but "WHY HER?"

But then we decided Prader-Willi was in for the fight of it's life. We got online, we made phone calls, we found support. And it was then and there that we decided that this won't beat us. You are going to have a happy, fun-filled life , surrounded by a family who adores you more than you can even imagine.

A very wise woman said to your mom "In the world of special needs, Prader-Willi- SO WHAT?" and she was right. God chose to give you to us knowing that this family will stand strong against this battle. We won't be afraid. You are going to grow, and learn, and laugh, and play. We are going to get you the best support you can have.

And we will never, ever stop advocating, learning, HOPING and most of all Emi, we will never stop LOVING YOU!

Love,

Your Aunnie

As many of you know my sister, Reagin, gave birth to my niece, Emily Rose Curran on 2/3/06. After 11 days in the NICU at Yale New Haven Hospital, Emily was able to come home on Valentine's Day! It was the best gift that any of us could have asked for.

Prader-Willi Syndrome is a very rare genetic disorder that affects Chromosome 15. It is estimated that 1:12,000-15,000 are affected (both sexes and all races). Several genes (as of yet unidentified) are missing which affect sexual organ development, growth and appetite. Several behavioral difficulties and cognitive abilities are affected as well.

Currently, there is NO CURE, although researchers throughout the world are working frantically to understand the very complex nature of this disorder.

There are many benefits to early intervention.....so the more we know, the more children with PWS, and especially our beautiful Emily, will thrive. To learn more, please visit www.pwsausa.org. 

edited: 03/23/2010