Twenty weeks into life, Hailey was diagnosed with alobar holoprosencephaly (HPE). Further testing showed that she had full Trisomy 13, also called Patau syndrome. Trisomy 13 affects about 1 in 16,000 babies. HPE affects about 1 in 10,000 babies and of those only 3% survive to delivery. With the severity of Hailey's condition, she is given little chance of surviving to term. But our family was dedicated to giving her that chance, no matter how small, and she gave us every hope for the future.
On June 12, 2009, our angel baby was born and delivered into our loving arms. There is where she spent her life and gave us the best 42 minutes of ours. Our journey led us to this moment in time, the moment we met our little girl face to face, and the precious time we shared with her. Now Hailey is safe in the hands of God until we meet again.
God has blessed our family in ways we didn't understand at first. But through our faith and trust in Him, we came to realize just how much purpose Hailey's life serves on this earth. Hailey has unlocked the deeper meaning of faith, hope and love, and has forever changed the lives of many. We are blessed to be part of such an incredible life and incredible journey.
Psalm 139:13-16
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Welcome to Hailey's Hope! We decided to create this blog to keep our family and friends updated on how we are doing. It is my personal hope that this journey will offer other parents in the community, maybe even the state or possibly the country, the necessary comfort and support needed to cope with the confusing emotions that accompanies the news our family received only a week ago today. Our daughter has impacted us in ways that are impossible to put into words, but we want to share with you our thoughts, our prayers, and the amazing impact Hailey has made on our lives.
We also want to thank all of you, from the bottom of our hearts, for the tremendous amount of love and prayer you have given Hailey, Tim, Ryan and I. I believe it has given
all of us strength we never knew we had in us. We count our blessings every day, and they only seem to multiply!
With Love and Sincerity,
Tim, Rachelle, Ryan and Hailey
But Jesus said, "Let the little ones come to me, and do not keep them away; for such is the kingdom of heaven." - Matthew 19:14
