Here is the letter:
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
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.
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.