Team Blake vs. Rett Syndrome

Though she be but little, she is fierce....

On July 7, 2014, we received the difficult news that Blakely has Rett Syndrome, an insidious genetic disorder caused by a random mutation of the X chromosome - MECP2 gene. The disease causes rapid developmental regression in girls which robs them of speech, fine motor skills, purposeful use of their hands, and the ability to walk. It may also lead to scoliosis, arrhythmia, breathing difficulties, and a host of other symptoms as these girls progress through life. In simple terms, Blake's capable brain is trapped in a body that she cannot control nor command.

With assistance from multiple doctors and therapists, we have designed a comprehensive protocol which includes daily injections, strict dietary requirements, multiple nutritional supplements, and daily therapy/exercise sessions designed to hopefully recover skills which the disorder has stolen, and to battle to maintain the abilities she has. Blake is a tenacious, determined, and fierce fighter...she still walks (many Rett girls do not). Her hands have weakened significantly (she has only minimal use of her right hand), but we are fighting to retain the strength she has. She has lost most of her ability to speak, but we will fight to re-learn those words.

This rigorous protocol will be a part of her everyday life. It is costly, and will continue into Blake's adulthood. The hyperbaric oxygen chamber (where Blake and her Daddy spend almost 2 hours per day) - cost over $17,000. Expenses for organic dietary requirements, supplements, injections, supportive braces, home therapy equipment, special needs education, and other medications often exceed multiple $1000s per month or more. Many of her doctor/therapist consultations are not covered by insurance. These are necessary expenses to give her the best possible chance at a quality childhood and adult life.

We want to hear Blake's sweet voice again. We want to see her ride her tricycle without velcro gloves to grip the handles, and straps to hold her feet in place. We want her to dress herself, feed herself, and walk up and down stairs. We want to see her continue to walk and move and use both of her hands - we want to make her as independent as possible. We want to ease her pain, and improve her breathing. Rett Syndrome is a daily battle, and a lifetime challenge. Until a cure is found, your help is appreciated beyond anything words can express.

We still have our dreams for Blake. We will not quit, we will not give up....SHE will not give up. That is just the way Team Blake rolls.

Thank you for helping Blake be the best Blake that she can be! #ForTheSakeOfBlake

You can learn more about this disorder at: RettSyndrome.org

You can read about Blake's journey at:  JoinTeamBlake.com

Love,
#TeamBlake








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Organizer

Brittany Pierce Goodman 
Organizer
Nashville, TN
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