Today is a MIRACLE day. We are celebrating Natalie's 2nd Birthday and a very special project we are announcing!
We clearly remember 2 years ago holding Natalie Grace in our arms and taking one moment at a time. Looking into her precious face it seemed unbelievable that calcifications were invading her tiny arteries.
Our unique journey began 30 weeks into the pregnancy. Anne began taking medication hoping it would stop the quickly progressing calcifications in Natalie. Physicians at Children's Hospital of Philadelphia (CHOP) reminded us frequently we were in uncharted territory. The medication worked, the calcifications did not advance. After birth Natalie was given another medication for the calcifications. Over time they miraculously began to disappear.
Natalie is now a spunky 2 year old and her favorite word is "MINE"! She often will come and tug on our hand, pointing with her little finger to where she wants us to sit on the floor and read a book. We live each day knowing her GACI journey may have ended differently. We are reminded many babies diagnosed with GACI do not survive.
When we were in the middle of the fight for Natalie's life, we searched the internet for hours attempting to quickly learn about current GACI research and potential treatments. We found very limited information! However, there were medical journal articles reminding us again of the low GACI survival rate. With these realities and having experienced two babies in 2001 and 2011 die from GACI-- we wanted to create a resource for families and medical professionals to have quick access to GACI information.
We are excited to introduce the website...HOPE for GACI
We have been able to launch this website through the generous memorials given in honor of our son, Ian James who died in 2011. THANK YOU family and friends for supporting parents and families affected by a GACI diagnosis.
This past year we have been blessed to connect with GACI families throughout the world in a closed group Facebook page. Their stories are real and inspiring. It has been reassuring to meet other GACI families. In addition to Natalie's, we hope to include on the website more powerful stories in the future.
The website includes Natalie's story and a "blog" feature. Our goal is to provide regular updates about GACI research, Natalie's progress and pertinent information.
We hope that you will share this website hopeforgaci.com with family, friends, and medical personnel.
And YES we also have developed a Hope for GACI Facebook page. Please "LIKE" our page to bring awareness to GACI and feel free to share your comments.
Gratefully,
Jerry and Anne Van Wyk