Mikaela Frances Jane

A website for our family and friends to keep up with Mikaela and her Arthrogryposis.
Also to help families find their way through this journey.

 
 

"Strength does not come from physical capacity. It comes from an indomitable will." - Gandhi

 
 
 
 

The little girl in the white dress


The day I came home from the 4D ultrasound, and saw Mikaela's bent wrists I immediately went online and searched to see what I could find. The first picture that popped up was of a little girl in a white dress. I was taken back by how precious of a picture it was, and right away knew she must have such an amazing Mom. Time passed and we still didn't have an answer, but the picture of the little girl always stuck with me. On February 24th, 4 months after seeing Mikaela's arms, we finally got an answer. We took Mikaela to Childrens Hospital of Los Angeles, where we met with Dr. Lightdale and she confirmed, Mikaela did have Arthrogryposis. We went home, and that night I went back online and typed in that big scary word, and what popped up? The same picture of that little girl.

A few days later Murad gave me a website to check out which was www.amcsupport.org and what's on the main page? The picture of the little girl in the white dress! Immediately I told Murad, "Look! It's her!" I didn't even know who this little girl was, but she was "always there". I went on youtube and typed in Arthrygryposis and the first video that pops up was about a little girl named Abby. I clicked on it, watched the video and there was the picture again... By the end of the video so many fears left my body, and was replaced with hope. I wrote a letter to the person who posted that video to thank them, which I still have and will post it below. I'll also post the video to share with you how wonderful of a mother Ani is. Abby is now 7 years old, and has some so far, thanks to her Mom.


Here is the letter:

 

Thank you.


I know I might be coming out of the blue with this email but I just wanted to tell you that you, Abby and your videos have been such an inspiration to me. I have a 2 month old daughter named Mikaela who was just diagnosed with Arthrogryposis. Long story short, when I was 29 weeks pregnant my husband and I went to get one of those 4D sonograms and when we saw her arms and hands, I didn't know what to say. They asked me if I knew about her being like that and I just stared at the screen in shock. Ever since then it was one wrong diagnose after another from Trisomy 18 to down syndrome.

Mikaela was born on December 27th and spent 20 days in the NICU, and just like the way you gave your daughter formula just to get her out of there, we did the same. Reading your story was kind of like hearing someone say mine. We brought her to the childrens hospital of LA 2 weeks ago and found out that it is Arthrogryposis. The funny thing is, I came across a picture of a little girl in a dress while trying to figure out what Mikaela had, and it was the most precious picture I have ever seen. I told my husband, That's a little girl who has one amazing Mom. And now, 2 months later after finding what Mikaela has, I went to the amc support website, and there was your little girl, that same picture. It was just a moment for me, and I had to write you to tell you what an inspiration and joy it is to see her videos, and it gives me so much hope.

So... Thank you. You answered so many questions I had on the website you made for her and it has given me and my husband so much more than we can say. God bless you and your family.

Sincerely,
Melanie

I didn't know what to expect as a response or if I would even get one, but I was glad I was able to thank her. I got a reply the next day. I got so excited I ran and told Murad, "She wrote me back!" When I spoke to Ani, she told me about her story and how she was determined to spread the word about her daughter and her diagnosis in a positive way, instead of all the negative she found online when she first heard of Arthrogryposis. She made a website called www.forabby.com which has everything you'd ever need to know about Arthrogryposis, and she founded www.amcsupport.org.

Mikaela and I had the honor of meeting Ani and Abby back in July of 2009, before the AMC Convention. It gave us time to sit down and ask my million and one questions, and she answered every one. She gave me the greatest gift... She gave me hope when I was completely lost. I feel so blessed to have met them. They have become such a huge part of our lives and our friendship has blossomed into family.

Here are a few pictures from that day.





Thank you Ani,
for being a blessing to hundreds of families.
We feel so lucky to be one of them!