Thứ Sáu, 27 tháng 1, 2017

Waching daily Jan 27 2017

We are the proud parents of daughters

with Rett syndrome.

Strong, powerful, beautiful,

remarkable girls and women that we are

lucky to call our own.

Despite the devastating effects of

Rett, their strength and their

resilience inspires and empowers us.

Every day, we watch them fight agonizing

symptoms. And yet we still see a spark

in their eyes, a glimpse of hopes and

dreams that persevere with them, a spark

that refuses to be extinguished. But that

spark that we see in their eyes is just

that, a spark, a glimpse of who our

daughters really are, what they are

capable of, who they might become. We

share photos and videos that highlight

the best moments of our days, but those

moments are fleeting mere seconds when

we're able to catch a glimpse of the true

selves, beyond the prison of Rett

syndrome. It's also those moments when

we're painfully aware of all that Rett has

stolen from us.

We're grateful for the glimpses but they

are only glimpses of what truly lies

within our daughters minds and hearts.

Despite all this, we remain optimistic

about the future.

We're holding fast to that spark in our

daughter's eyes and imagining what it

will become once we have a cure. We dream

about their personalities, their joy, their

love and their laughter, freed from the

cruelty of Rett. We are optimistic in

large part due to the remarkable progress

we've seen in research. It gives us a

very real likelihood that the glimpses

we now see of our daughters will become

so much more. To research the glimpses

can shift two hours and days and months

and years where our daughters can be

there real and true selves. We need more

families to step up and fundraise for

the research and more of their relatives

and friends to make this : their leading

cause. We need more people to understand

that this is a cause for which their

contributions can lead to a huge impact

on lives. Time is of the essence. We can

wait no longer for the glimpses we see

of our daughters to turn into much more

than a flicker. This is within reach

scientifically. With your help we can

make the Cure a reality.

Our children are waiting.

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