Grace for Rett » Grace's Life with Rett Syndrome

Rett Syndrome on The View {the footage & my thoughts}

Note: This little girl passed away in mid 2012 🙁

So if you haven’t yet seen the clip of Rett Syndrome being featured on The View this week, here it is:

I was so proud (and very tearful) to see RS gaining national attention in the U.S. For a couple reasons:

  1. Research is only funded through private donations. There is no government or drug company funding because they only fund research when it’s nearly complete and, therefore, successful and profitable for drug companies. So we need all the publicity we can get.
  2. Monica Coenraads was a guest on the show, talking about the nearness of a cure. She’s the president of the RSRT and they are the main supporters for Rett Research. If you’re going to give money, give it to the RSRT! And if you’re in the UK, the counterpart is RSRT-UK.
  3. They didn’t mention it on the air, but all of the studio audience got a copy of the newly released Rett: The Documentary which tells the story of three families with very different girls all struggling with Rett. It’s heavy, but light and surprisingly uplifting. And it has pictures of Grace on it!

So what did I think personally? I think someone should teach Whoopi some math. RS isn’t ‘one in a trillion’. That would mean that RS doesn’t even exist! :*) But I think the ladies were great, asked great questions and the guests (the Gutierrez family) were so brave. I love that they pointed out that our girls are prisoners in their own bodies and that they know everything going on around them. They described how Stephanie can lift her leg on command and that’s the exact scenario in which we discovered that Grace is ‘in there’ and can understand us. We can give her many different commands which she can carry out. She flirts, acts silly and even ‘tells jokes’ as we put it.

I think Monica was eloquent and explained the situation with research very well given the very short amount of time she had to speak. “It’s not a matter of if, it’s a matter of how”.

Rett Syndrome is not incurable. The cure is coming.

Shannon - February 2, 2011 - 6:00 pm

I just wanted to say that I love your blog! You have a mindset that I share with my son who was born with Osteogenesis Imperfecta. Your pictures are just purely stunning. I wish you lived in Oregon so I could hire you:). Congrats on the coverage via The View. I’ve linked to you on my FB and hope a cure gets even closer within reach!

-Shannon

Sue Dales - February 12, 2011 - 10:07 am

Thank you for sharing this with all of us. The revelation (of the cure) is coming, though it seems like its being delayed it will not and will arrive on time.
So grateful that I know Gracie May Halford and her awesome family!

Anna - February 24, 2011 - 10:14 pm

Elizabeth, I’ve been following your blog for photographers (thank you for sharing so much of your wisdom with us!) but I just had to check out this personal blog of yours about your Grace. I just had a baby girl only 5 months ago and I’m a Spec Ed teacher. My biggest, greatest fear is to have a special needs child, not because I don’t want to care for her, but because every child deserves to be healthy and thriving. My eyes fill up with tears just thinking about the daily ordeals you and your family have to go through. You’re right: a cure is coming. But in the meantime, Grace is trapped in a body that doesn’t work corrrectly. My heart goes out to you. You are so brave and such a wonderful mother. Grace is blessed in that sense. Hang in there. You are not alone. And even though I do not have a child withg Rhett syndrome, my heart goes out to you. Keep up the faith!

Adrienne - April 5, 2011 - 12:33 pm

Elizabeth,
I’ve been following your photography blog for months now, and this is the first time I realized you have a blog dedicated to your daughter. I hope a cure is found soon.

The portraits you just made of her are stunning.

Beth Bruno - September 5, 2012 - 4:31 pm

YOU are brave too. Have you been told that recently?

Sally-Ann Garrett - September 5, 2012 - 4:53 pm

So, so sad that little Anna passed away. One more Angel gone before the cure is available. I hope her family gains strength and support thought the Rett community. My thoughts are with them today, and over the coming weeks and months.

F a c e b o o k