Meet the Heroes

"Truly wonderful, the mind of a child is." -Yoda  

"And if you believe in gene expression you may find solace in this: She believed she could and so she did."  - Unknown


 
My sister is 5 years old and she can’t walk or talk but she tries so hard to.  She has different therapists that come home to help her and she only gets a 15 minute break.  She uses many tools and toys, like a walker (G), baby at bed time (O) cards to help her talk and understand, her talker app (O) and cards, a whispermaphone to hear sounds (g), a flute and talk tools and her eye patches glasses to help her make sounds and see better (L), and a picture binder for communicating and chewy tubes to help her bite stronger for eating (E).    Even with all of this, she still keeps smiling and hugging.  My sister is awesome and inspires everyone!

My sister is 5 years old and she can’t walk or talk but she tries so hard to.  She has different therapists that come home to help her and she only gets a 15 minute break.  She uses many tools and toys, like a walker (G), baby at bed time (O) cards to help her talk and understand, her talker app (O) and cards, a whispermaphone to hear sounds (g), a flute and talk tools and her eye patches glasses to help her make sounds and see better (L), and a picture binder for communicating and chewy tubes to help her bite stronger for eating (E).  

Even with all of this, she still keeps smiling and hugging.  My sister is awesome and inspires everyone!

 

 

We have superheroes in our lives that come in different shapes and sizes.  Even those with Chromosome 8 differences share many similarities. They are hard working individuals that average 1,500 hours of therapy a year.  They deserve to enjoy every opportunity that life has to offer. And these heroes are doing it with a smile despite the daily challenges that face them.  

The majority of these children have developmental delays amongst other health complications in a wide range including disordered acquisition of cognitive and social competence and delays in reaching developmental milestones.

They are living with a label that is a mouthful that has no recognizable name and falls under the broader category of a rare genetic disorder or orphan disease.  However, with our help, these heroes should never feel alone and labelled – they can learn from each other and teach the world…so that a chromosome 8 disorder transforms from an adjective to a meaningful and inspirational call to action.  And that is why these heroes are special.

And let’s not forget that superheroes have a support system including tireless working Mothers, Fathers, Siblings, Relatives, Doctors, Therapists and more.  We celebrate them all!