I’m Not Speaking…

October is Rett Syndrome awareness month…in honor of my friend Colleen and her little girl Claire I am going to take an hour a week this month NOT speaking to raise awareness…

What is Rett?

That is a great question…I have never heard of it before I met Colleen I had no idea…In an interview at Chris Morris’s blog Colleen described Rett as this

“Rett Syndrome is a rare genetic disorder that primarily affects girls. It limits how the synapses in the brain connect. This leaves them with severe motor challenges. Most have little purposeful hand use, are completely non-verbal and require assistance if they can walk. Along with the severe apraxia comes scoliosis, seizures and GI issues. Not every child with RTT has all of those however they are common across the population.

Girls with RTT like Claire are born healthy and develop typically for the first year. We had no idea that anything was amiss until she was 14 months old. After batteries of testing, blood, urine, MRIs she was diagnosed 2 weeks before she turned 2.

She fed herself birthday cake that year and continued to feed herself until Thanksgiving. Thanksgiving dinner, 2007 was the last time she fed herself, the next morning she woke up and her hands just went together and she stared at her food. She was also 2, going through a sensory hell along with the loss of use and was pissed off for a few years. If you would like more details on the Rett Syndrome, click here .”

Go to Chris’s blog post to read more about a day in the life of Claire and her family…it is raw, and necessary that we not turn our eyes to the things that make us uncomfortable…

Claire is unable to walk, talk, feed herself, and has seizures regularly some days are full of them…while her body has turned on her, Claire’s mind is typically developing…

pictures like this one show the depth and longing to communicate…can you guess which of these days was full of seizures?

another thing of beauty in these photos is Claires’ little sister Chloe…who says things like

“I’m going to be a Rett scientist that works from home to make a medicine. Don’t worry Claire, I won’t make it a shot”

…for her birthday she wants “money for Rett Syndrome”

“I’m going to be Barbie Mulan and in her second movie she has Rett syndrome and secret powers of love. But I will be the one who has medicine so I still can’t talk but you know, can do other stuff.”

“Chloe: I think Claire is the Queen of Rett syndrome.
Colleen: why?
Chloe: she’s really good at it. And I’m the princess of Rett syndrome because when I talk with my eyes people think I have Rett syndrome.”

“Chloe to Claire as she’s seizing “I know it’s scary but sometimes life just isn’t easy.””

Is there a cure?

nope, there is not…but there is HOPE …

right now clinical trials are being run…it takes brave girls like Claire and their families willingness to travel to Boston every few months…

the cost is high; mentally, physically, and financially…many families that would be willing to participate are hindered by their inability to pay for travel costs, and several nights in a hotel…that is where the Rettland Foundation comes in…

seeing the need Colleen started this foundation a little over a year ago…the Rettland Foundation supports families emotionally and financially as they participate in the Boston clinical trials…

What price would you pay to hear your little girl say ‘I Love You’, to have her wrap arms around you for a hug? What price would you pay to hear your daughters laughing together, fighting together, sharing secrets?

35 seconds feels like an eternity when your child can’t answer…

How can I help?

If any of this resonates with you

please consider donating to the Rettland Foundation…

or better yet,

order your Not Speaking kit (available to order until Oct 21st)

and join in the challenge to bring awareness…