Thursday, December 23, 2010

Great Day!!!

Oh. My. WORD. What a day. What an absolutely incredible day. My morning started out like most others-exhausted, trying to keep my happy, giggly little Emri entertained. Emri got sleepy and decided it was time for her first nap of the day. When contemplating what to do with my time, I decided to do a little research on Marfans. I had done A LOT of research on Beals, but when we found out she actually had marfans, I was research exhausted. This morning I just set my mind to learning all there was to learn on Marfans so I could be educated on Emri's condition to the best of my ability. While typing in various searches in google, I came accross an article titled "Old Drug Offers New Hope for Marfan Syndrome : NPR ". READ IT. I was overcome with joy when I read through this article, but being a skeptical person, I decided to type in the name of the child and see if there were any more articles telling his story...there were. Here are some more...  
I read through my tears and thanked my Lord for revealing this all to me. I searched the internet for Blakes mom and found her on facebook. I will share the messages we wrote back and forth. 
 My Message to Anita: 
Anita! My name is Erin Van Andel. I live in Bellingham, Washington. I have read your story on the internet now about 6 times and every time I can't help but feel hope again for my 5 month old daughter, Emri. She was diagnosed about a month ago with neonatal marfans. We got the exact same horrifying prediction-that she won't live past 2! HELP! I would love to connect with you about all of this and would feel honored to get your advice on what our next step should be! I would LOVE to hear more about this "losartan" drug. Thank you so much for your time and I hope we can connect soon. ~Erin Van Andel~

Her response to me:
Hello! I cried when i read your message. It made me think of how scared and alone we felt. I would love to talk so feel free to call me. My number is ***-***-****. I have advice and truth for you. Emri WILL live past 2 and with the amazing medical advances she will have a very good life, with some bumps along the way but with parents that love her she will be strong. Blake is in 2nd grade and amazes me daily. he has an incredible spirit, and make my job easy. She is a doll. I would love to help you. I will connect you with Dr Dietz...he is the greatest!

I dialed Anita's number as fast as my fingers would allow and got a sweet, strong, amazing woman on the other end. She was so encouraging and so willing to help us through this whole process. She STRONGLY urged us to get into Dr. Dietz in Baltimore as soon as we could. Looks like we'll be traveling to Baltimore soon! We are in the process of getting an appointment set with Dr. Dietz and couldn't be more excited to meet with him. He clearly has a passion for Marfan's kids and has inspired us already through Blake's story. Anita re-ietterated to me over an over that she has a very happy, special little boy. I described Emri's demeanor to her and she said Blake was the same way when he was a baby and continues to bring joy to everyone he meets. We hope to meet this brave little guy some day. 

In the midst of all this, I can't help but thank my Heavenly Father with all my heart for all he has done, has been doing and will continue to do for us. Talk about timing...we all know flying to Baltimore, seeing a world-renowned doctor, eating, and staying in a hotel isn't going to be cheap. Not to worry. We just received a more than substantial check from Brett's family and friends. We have been so blessed to receive financial support from a few different sources. Without these people, we would be financially unable to supply Emri with what she needs. God is SO good. 
We realize this doesn't change God's original plan for Emri's life-He is just continuing to reveal it. 
THANK YOU to everyone who has continued to pray, who has given financial support or even emotional encouragement. We are on quite the journey.

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