A Cure for Chloe

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Don’t we all imagine the things we would teach our daughters? When Chloe was a baby, I imagined these were the easy days, before she could argue, before she could disregard every lessons I dreamed I’d teach her.

At Chloe’s one-year appointment, we realized she had some delays, in growth, and skills. We began testing. Blood tests, x-rays, an MRI, vision, hearing. Her tiny body had doctors puzzled. For two and half years, the tests continued. Heads were scratched. She grew, she gained little skills, like turning the pages of a book when she couldn’t point her finger to show me what she wanted. Things that would frustrate the average parent were small miracles in our house. Chloe learned to open the cabinet on her own! (Hurry, take that toilet brush away from her!)

At age three she still was not walking, or talking. But she stole hearts right out of the air in any room she was in. For so long, so many questions. With one phone call we found out. Rett Syndrome. Rett Syndrome was not the scariest of the possibilities, but it was still heartbreaking.

Now Chloe has a team. Teachers, therapists, doctors, all teaching me how to teach her. To walk with her tiny walker. To hold a fork or spoon. To control her hands.

And she is bold. She will look into the eyes of anyone who catches her interest. She will hold tight to anyone she wants to hold, familiar, or stranger. I don’t imagine she will ever think she is not enough, or too much. She is just Chloe, and she wants you to know she loves you, whoever you are, and here’s a smile to prove it. She hands out smiles for free, and people take those smiles with them as if they had just found a hundred-dollar bill.

One of her greatest loves is music. Oh, how she loves music. And so, in honor of this, to each person who donates, we will send a link to download a song her dear friend composer James Stewart wrote just for her a few years back. We play it for her when she is blue, or if she is fighting seizures. We play it when we ourselves need reminding, this life is beautiful, and textured, and breathtaking...and worth it.

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.

Supporters (3)

  1. Rich Gardner 
    9 months ago
    $500
  2. Jennifer Everett 
    9 months ago
    $250
  3. R&J Gronseth 
    9 months ago
    $50

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