I am stay at home wife, mother and Jesus lover. Claire completed our family of six on June 12,2007. She was born with spina bifida,hydrocephalus,chiari malformation and polymicrogyria(congenital brain defect). She had her first seizure at fourteen months old and is now diagnosed with epilepsy.
Our daughter is a miracle. She has taught us to live life to the fullest while in the loving spirit of God’s grace. We choose to always be positive,stay humble,never give up on hope and keep faith first.
I am forever encouraged by the people we meet on this journey. We all have a story to share,thanks for reading ours. Now tell me about you 🙂
Visit us here: http://www.carepages.com/carepages/babyclairespage
Hello Butter 
Thank you for sharing your story! The blessings we receive can come from the most unexpected places. How lovely of you to share. 🙂
Sasha K, thank you for reading 🙂 Happy to meet you!
I am sooo glad I read your story! Claire is so beautiful my Allison would just love her, she is such a beautiful little girl!!!
My daughter was diagnosed with Epilepsy about 3 years ago. for about a year and a half she has been on her “magic diet” and was diagnosed seizure free on the diet about 8 months ago. She has a “bucket list” of all the places and things she wants to eat when she is done with her magic diet. Good luck with your journey on this awesome diet!!!
Just reading some of your story. Claire is beautiful! Our Isabella has a similar story. She is 5 months old. I asked the Neurologist the other day what he would call the diagnosis of her brain and he said polymicrogyria….I see that written above about Claire. Then I see her beautiful smile and its awesome. They mentioned Isabella maybe not being able to see/hear/eat/etc….BUT, she is already amazing everyone. She sees, She hears (although she is getting hearing aids to help with that), and she takes her bottle well. She is starting to smile and interact Praise God. Maybe some day she can meet Claire. Isabella also has an older sister and 2 older brothers. Her website is caringbridge.org and the website name is isabellahopedesantis
I contacted you once already thru email I think. Glad things are going so well for you and your family!
Kristen DeSantis
Yes, Kristen we would love to meet you both! Did you know Claire has an older sister & older brothers too! Our stories are very similar. I’ve been keeping up with your caringbridge page too. Isabella is beautiful and I can see God is working miracles in her and trust that He will keep on amazing you! I think Lisa may have given you my # if you ever want to chat? Take Care &I God Bless!
How can I follow your blog?
Thanks Maggie for your thoughts & prayers! There should be a couple ways to subscribe & follow us. One way should appear on our homepage, it is a pop up window at the lower right of your screen. Also there is a “follow this blog” option box when you make a comment,if you check mark the box after commenting you will be subscribed. Thanks & Blessings, Tina
Hi.
This is such a touching story of God’s grace working in your family’s life. I pray for continued strength and compassion within your family.
Thanks for the follow. My story is different from yours but I’m pretty sure at one point you wondered “why” like I did. We just rest on the promise that all will be made clear (if we still want to know, that is) when we’re face to face with our Lord.
May the Lord’s peace be with you and your family always.
Blessings and warmest regards,
Mary