Grace for Rett » Grace's Life with Rett Syndrome


Grace was born in November 2008. She rolled over in April 2009. And then never did anything ever again. She was diagnosed quickly with Rett Syndrome in December 2009.

Grace’s mummy (that’s me!) is a photographer so, naturally, every leg of this journey is recorded photographically. We are sharing our story here on Amazing Grace {for Rett’s} because we know we’re not the only ones going through this.

In any hardship I’ve ever experienced, writing and photography have gotten me through it. So this is more for me than anyone else.

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Please view the pages and comment so we know we are not alone.


Kelly Butler - December 31, 2009 - 9:41 pm

She is BEAUTIFUL! My daughter Brooklyn is 4 years old and has Rett Syndrome.

Andrea H White - January 6, 2010 - 6:22 pm

This is a “good thing”. Others will benefit and so will all of you.
Keep the Faith. You are not alone.

Bill Caldwell - January 6, 2010 - 6:54 pm

I’m still Praying several times daily for Sweet Little Grace to be completely & wonderfully HEALED by JESUS CHRIST OUR LORD!!!
I’m also Praying for you & Steve to have Peace & Comfort thru this time in your lives & that you will stay in the WILL OF GOD for HIS Service! I love you both & am very dilligent in my Prayers
for ALL your Family. Stay Well & Happy & Thank GOD for the beautiful Family that you have & say things as tho they were… not as they seem! GOD BLESS YOU ALL!!!! Bill

Toby Egelnick - January 7, 2010 - 3:23 pm

Great picture and you’re not alone. My daughter Isobel is now 5 and was diagnosed with Rett shortly before her 2nd birthday. Its a ‘family’ no one wants to join but it has many members across the UK and worldwide and the outlook is positive!

ikenna - April 21, 2010 - 3:29 pm

Very pretty daughter 2 yrs has retts.she has not walked yet.never crawled,does wriggle her hand and does hand to mouth movement all the eyes are on the Lord Jesus for a miracle

karley carter - June 26, 2010 - 7:48 am

my daughter (stephanie) is turning 14 this year and was also 2 when we found out she had retts.steph could talk,feed herself,walk.but has lost all of that now.steph started havin seizure at 9 .my girl is a very happy girl.laughs alot.she does all her talkin with her eyes.she is world.

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