A New Day for Gray

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We have the same hopes for our son that any parent has for their children. We hope to one day hear Grayson say "I love you Mama" or to watch him throw a football with his dad. For Gray, that is nearly impossible right now.

Six months ago, our handsome, man-bun-wearing little cutie was diagnosed with the rare neurological disorder, Rett Syndrome. Until there is a cure, simple tasks like clapping, pointing, or singing a song won't be feasible for him.

Grayson is our miracle boy. He loves to watch Elmo on Sesame Street and his contagious laugh makes even strangers stop and smile.  He works extremely hard every day in hours of various therapies. Rett causes seizures, physical and cognitive developmental issues, and robs him of abilities he once had. Still, we find joy and celebrate the “inchstones” he makes. Grayson is brave and puts forth so much effort — even at moments where we would feel utterly exhausted in his place — and makes us immeasurably proud.

This disease is almost exclusively found in girls, typically boys do not survive in utero and most pass before the age of two. But we are rising above the fear and refuse to allow statistics to take control. There is a reason Gray is still here with us.

Our goal by sharing our story is to raise awareness. It is believed that Rett Syndrome may be the first curable neurological disorder. Science is close, in labs the disorder has proven to be curable and reversible. Our hope is to find the cure NOW not in 20 years.

Please help us give our boy a voice in the fight against Rett Syndrome. 100% of donations made on behalf of Grayson go straight to funding research for a cure.  A sincere thank you to friends and family for all of your support. We won't give up until we have that cure.

At each giving level there are other “perks”:

7 Besito: We'll give Grayson 7 kisses, a hug, a fro-yo with sprinkles, a cookie, a movie ticket, and a toy on your behalf! Plus we'll make you a thank you video!

6 Besito: We'll give Grayson 6 kisses, a hug, a fro-yo with sprinkles, a cookie, and a movie ticket on your behalf!

5 Besito: We'll give Grayson 5 kisses, a hug, a fro-yo with sprinkles, and a cookie on your behalf!

4 Besito: We'll give Grayson 4 kisses, a hug, and a fro-yo *with sprinkles* on your behalf!

3 Besito: We'll give Grayson 3 kisses, a hug and a fro-yo, on your behalf!

2 Besito: We'll give Grayson 2 kisses and a hug on your behalf!

1 Besito: We'll give Grayson a kiss on your behalf!

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

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  1. Renee Narson 
    1 month ago
    $100
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    2 months ago
    $100
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    6 months ago
    $35
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    6 months ago
    $50
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    6 months ago
    $25
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    7 months ago
    $30
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    7 months ago
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    7 months ago
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    8 months ago
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