Baby Adalay

Hi,

My name is Ashley and I am 26 years.

I have been in an amazing relationship with my husband Josh for 7 wonderful years and we are currently expecting our second child!!

As much as we are excited for the birth of our baby girl we have had encountered a lot of hardships along the way.

Last year on December 28th we found out we were expecting our first child, I was so excited as motherhood was something I could not wait to experience.  I quit smoking instantly when I found out I was pregnant and did everything I could to ensure my baby would be healthy. However, it was not meant for me to have that baby and on April 16th my birthday I lost my son at 19 weeks.  I was rushed to the hosiptal and I gave birth to Lex at 10:45 that morning. I held him as he struggled for life and watched as he faded away. My heart shattered that day as my son was taken from me.  My Doctor instantly put me on birth control so I could not get pregnant as he had a feeling something was physically wrong with me and the long wait to see a specialist began. Seven months went by and finally we got in to see Dr. Butt. She strongly felt I had an incompetant cervix and that I would have to be heavily monitered during future pregnancies because I could lose another baby and the surtures may have to be put in for me to carry full term.

I was finally given the okay to start trying again and March 28th 2013, we got the positive!!

I had so many emotions; happy, sad, fear and worry. As time went on and being under Dr. Butt's care it helped with the anxiety. She is an amazing Doctor!! Everything was going good up until my 20th week. My cervix started funneling and I was no longer able to work. I am very limited in what I can do. We are now living on my boyfriends income as I was self employed and cannot draw unemployment. We have been managing but with the trips to the specialist, things are getting tight especially the cost of gas as we travel 2 hours one way every 1-2 weeks.

When we went to our last appointment a bomb was dropped on us and the worry turned from me to our baby girl.

She was showing raised fluid amounts on her left side of the brain that could indicate a chromasone disorder, if that wasn't hard enough my doctor also told me that she may not have individual fingers or toes.

After talking to colleagues and other specialists they believe our baby girl has a strong chance of having Apert's syndrome.  We now must meet with Geneticists from the IWK in Halifax about (6 hours from us) for testing and to determine how bad the syndrome has effected her. 

Once she is born we are facing mutliple surgeries on her skull, hands, feet and face mostly reconstructive surgeries to open her soft plates to releave pressure off her brain.

Once finding out about all this at the appointment I was asked what my intentions were.

I looked the Doctor in the face and said, "I don't care about the package my baby girl comes in just please tell me she is going to live".  

She told me she is extremely healthy other than the current worries.

She is going to be our beautiful girl no matter what, I just dont want to lose her.

However, with current issues things have been a lot harder. The traveling costs are getting high, my husband has to pay for traveling to and from appointments, my medications to help harden my cervix, prenatal vitamins plus the usual house bills and now winter is upon us and we are struggling to buy the winters wood. 

The funding that is raised will be used to go towards traveling expenses and medications.

I want to thank everyone that has taken the time to read our story and that have helped with funding. I believe angels are people in disguise and you all are our angels for helping us get through all this.

Thank you from the bottom of our heart 

Josh, Ashley and baby Adalay

Apert's is a rare genetic disorder 1 in 200,000 are effected by Apert's

It affects the soft plates around the skull causing them to fuse together and putting pressure on the brain.  The babies also suffer with gloved hands where there are not distinct fingers as well as toes.  In some cases the heart and kidneys are damaged.

For more Information on Apert's you can visit the website below

http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/apert-syndrome/?gclid=COuGiNuRsLkCFcs7OgodJEwAzw