Thursday, May 14, 2009

Juliana's Journey

Hello Everyone! We are so proud to be sharing with you our new journey. For those of you that know or for those of you that we have not reached yet, our beautiful Juliana was diagnosed back on December 8, 2008, with a very rare neurological condition called Rett Syndrome. It is a condition that has unjustly robbed her ability to walk, talk, and even do some of the most basic functions that many of us take for granted. We have remained hopeful that with therapy, Juliana may gain the ability to walk; however, speech is a function that most Rett girls never develop.

Over these past several months of learning and acceptance, we’ve finally decided that it’s time to move beyond mourning the life she may never have and better yet, celebrate the life we know she can. We have been comforted by the incredible network of Rett Syndrome families we’ve met and this is why we are writing to you today.

We all know that there is incredible strength and power in numbers. We stopped and realized one day that we have such an awesome network of friends and family; a network so strong that we hope will be encouraged and inspired by our beautiful little girl to help us do something about this incredibly debilitating condition. Just recently, we’ve partnered with the organization GirlPower2Cure. Girl Power 2 Cure is a non-profit organization dedicated to raising funds for research, for treatments and a cure for Rett Syndrome.

Here’s what we would like to accomplish:
1. Raise an overwhelming awareness about what Rett Syndrome is and where the research is headed
2. Fundraise for research in order to someday realize our dream of seeing a cure for our beautiful Juliana
Because Rett Syndrome is so widely unknown, obtaining public funding for ongoing research has been difficult and unsuccessful

We’d like to ask each and every one of you to do just that- help us raise awareness and funding. We want to create a campaign by asking you to share this email with your extended network of friends, family, and beyond. Share the link at the bottom of this email and say, “I know someone with Rett Syndrome and here is how you can help!”

The link below will take you directly to Juliana’s very own web page at Please take a few minutes and explore the site, learn about Rett Syndrome, and donate what you can. Please understand, every penny counts and truly will be counted because 100% of all donations go to fund Rett Syndrome research that we so desperately need. In fact, take a moment and read about the incredible work that has been done to reverse the effects of Rett in mice.

Well, again, thanks so much for taking a moment out of your day to read this and hopefully be inspired to take action. We are so truly blessed and must remind ourselves daily that God has entrusted Juliana’s care to us and for that, we must remain humbled and thankful. As you can imagine, we have a pretty challenging journey ahead of us, but all in all, your prayers and thoughts have pulled us through to another day. There’s a great quote that we love that reads: Powerful dreams inspire powerful actions. Please help us realize our dream and take action today. We would love to hear how you’re helping lead the charge to finding a cure for Rett Syndrome!

God bless and go GirlPower2Cure!


Roger, Kristy, Juliana, & Olivia Brooks

1 comment:

  1. Hi Kristy, I guess you already know Avery :) Welcome to the best family that hates to see new members! Juliana is beautiful!