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Hi, my name is Blakely, but you can call me Blake.

 

I love reading books, watching Story Bots or Trolls, listening to TobyMac and Imagine Dragons, swimming, swinging, riding horses and just being outside.  I also really love to eat!  I don't talk much, but I love being around other people, and I love spending time with my family and little sisters, Andi Mac and Emmy Jo.  

 

I know a lot of stuff, but it is difficult for me to express myself because I have Rett Syndrome.  When I was one, I could talk and move just fine, but I started to lose these abilities around 15 months old.  I can still walk, and I try to run, but I need help doing some things, like going up and down stairs or anything that require my hands.  I know what I want to do, but my body can't always do it.  But I am so SMART! 

 

Thankfully, I have a great team of people who love me very much.  They help me dress, eat and hold my toys and books.  I work very hard every day with my therapists and parents to learn how to use my body.  I may not be able to hug you, but I give lots of good kisses.  I also use my eyes to speak through a Tobii device.  I love my school and I am learning everything a 2nd grader should. My parents say I have the prettiest smile they've ever seen, so I give a lot of those too.  Mommy says I'm pretty on the outside and pretty on the inside too!  

 

 

   The Purpose of Team Blake...

To keep everyone updated 

 

While we prefer face-to-face conversations, that's not always possible given busy schedules and the distance between our friends and family.  In our world, things can change quickly.  

 

We have found it difficult to keep everyone updated "real-time", and so much can be lost in translation.  We will use this site as an on-going update of Goodman happenings, fundraising opportunities, updates on Blake's progress, and a historical record of our journey through the world of Rett Syndrome. (Find Join Team Blake on FB for the latest updates!)

 

To do our part to help find a cure

 

Ultimately, we all want a cure, and we know it is possible!  Rett Syndrome is the FIRST neurological disorder to be reversed in a laboratory environment.  These findings prove the POTENTIAL for Rett Syndrome to the be the world's first curable brain disorder in humans.  To realize this goal, more funding is needed.  

 

There is an urgency in the Rett community to provide funding for new and ongoing research targeted at reversing Rett, as well as effective treatments and therapies to improve the lives of those who suffer today.  We (and every other Rett family) want our little girls cured yesterday, so today and every day, we will do our part to raise the money to fund these pursuits!  Please help us! (Donate to RSRT.org or RettSyndrome.org )

 

 

 

 

 

To be a resource for other Rett families

 

It is always comforting to observe how others cope with adversity, especially when you find yourself in similar circumstances.  Since Blake's diagnosis, we have found solace in reading other Rett family blogs and websites. Daily living with Rett Syndrome can be a very difficult and isolating experience, but through the stories of others, we realize that we are not alone.  

 

We hope and pray that the sharing of our struggles and victories will not only create a community of support for Blake, but also encourage and support other families coping with Rett Syndrome.

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To glorify God

 

In all we do, we seek to glorify God.  We are not perfect people, but we serve a perfect God.  There is nothing easy about our journey, but we believe there is always a higher purpose, and a higher calling.  We believe that a part of our legacy will be determined by our example, and response to this challenge.

 

His grace is sufficient, His power is made perfect in weakness (II Cor 12:9).  We do not perfectly understand why we've been led to this place, but we continue to look to God to see how He will use this challenge for good.  (Gen 50:20 & Rom 8:28).  Please pray with us.