Monday, May 12, 2014

January 13, 2011. Cameron has Rett syndrome: Our letter telling our family, friends and the world.

January 13, 2011
Cameron is one in 10,000 girls.
As you may or may not have known, Cameron has recently been tested for genetic disorders, specifically Rett Syndrome. After several weeks of waiting, the test came back positive. Like many of you, we had never heard of this before. When we looked it up, we were terrified at what we found.
This is an extremely rare disorder that predominately affects girls. The odds of having this are 1:10,000 girls. There are several different mutations of a gene that causes Rett Syndrome. It is not hereditary; it is a fluke.
These girls develop normally for their first few months, as Cameron did, and they hit some milestones on time. From 6–18 months, these girls have a regression in skills. We did not notice a regression, but that might be because Cameron never had the skills to begin with, like crawling. To this day, Cameron is 22 months old and cannot crawl, walk, talk (a few syllables), and has lost manipulation skills in her left hand. I cannot even describe to you how it feels to watch kids Cameron’s age and a year younger than her cruise by her in every facet. Unfortunately we do not know what the future holds for Cameron, but we have a lot of hope.
We now understand that there is a very broad spectrum for this disorder. I will give you reputable resources to review for Rett Syndrome because when you do a general search, the most common results are outdated and give the worst-case scenario. 
(This is the place to go to read about Rett treatments, science, reversal, etc.)
After receiving the devastating news, my body pretty much shut down. I lay in bed feeling paralyzed yet feeling a lot of pressure from the baby down low and in my legs. I just lay in bed for hours, terrified that I would go into labor early. I’m doing as best as I can while 35 weeks pregnant, as #2 must stay in a few weeks longer and all this stress is not good. 
One of my sisters (Thank goodness for a big family—especially lots of sisters!) told me two things the day we found out the diagnosis that really helped:
1. This will be the hardest day.
2. Cameron is so happy. She doesn’t know she’s different. It’s you and Billy this is going to be difficult for. 
Another sister told me "You are not a victim.  Use all this energy and do something positive with it."
At all six Corrado-kid weddings, my dad gave similar speeches about family, which you may or may not remember. He said It takes a village to raise a child. And of course from the Godfather “May your first born be a masculine child” (which has no application here, but just funny). Growing up in a huge family surrounded by a wonderful community, I have always believed in the thought that “It takes a village to raise a child.” We are very blessed to have such an amazing support system through our family and friends. 
After a lot of crying, laying in bed, staring, feeling numb, we woke up the next day realizing that we now have a diagnosis and can more forward. There was some comfort in knowing what we are dealing with and now to move on. 
Since we found out, we have been in contact with a woman with great knowledge about Rett Syndrome who also has a strong connection with key opinion leaders in the Rett field. This was her response to my email, which gave us a lot of hope:
I am happy you reached out to me. I am an advocate for girls with Rett Syndrome all over the country, and I can honestly tell you that I will leave a smile on your face when we are finished talking. Rett Syndrome is not degenerative and it has been reversed in mice with Rett Syndrome and also in human stem cells. We are heading into clinical trials with a drug any day now and a second drug has already been found that reverses Rett. It is the only known Autism Spectrum Disorder with a known genetic cause and the entire autism and Down Syndrome community is waiting for us to unravel the mystery of the Mecp2 gene because we know it is also the culprit in other disorders. My child was also diagnosed at 22 months, and at age six, she is incredible. She is in a typical classroom with typical children and THRIVING. Your daughter will improve tremendously. This is not a death sentence!!
I later spoke with her over the phone for 45 minutes, and she told me about all the wonderful research and people to contact. It seems as though we might be doing a bit of traveling for resources, but there are so many resources in Chicago. It was a tremendous relief speaking with her. I know it sounds strange, but it got us excited to be part of all of this. We are hoping Cameron can be part of a big breakthrough, as we know she is destined for greatness.
I am so incredibly grateful to have Billy as my husband and Cameron’s dad.  He has been eternally optimistic. When we woke up, I looked on the Internet for charity events in Chicago for Rett Syndrome. I told him there was a Strollathon in Chicago on May 14 (please save the date). He smiled and said I’m way ahead of you. I know. Plus, we are going to start a fund for Cameron. We have so many resources so will have a fundraiser. It won’t be productive for us to feel sorry for ourselves. We are going to do everything we can for her. It’s going to be okay.  That positive attitude is exactly what we need to have. Oddly enough, both fundraising ideas that Billy had right away involved golf… hmmm, weird. I guess Cameron and I will be the in cart selling beer on the course????  
I cannot tell you enough how much we appreciate all the love, support, prayers, and thoughts you have sent our way. Please continue to do so. If you have any resources or contacts that might help us, we would also greatly appreciate their names.
Every time I was at the other end of news like this or saw parents with a child with disabilities, I thought "How do they do it?" Well, we know the answer now—there is no other option. You do not know any differently because you do anything for your child. A friend of mine from Lake Forest told me she never realized how much her parents loved her until she had her own child. I couldn’t agree more. I always knew my parents loved me, but you just don’t understand the depth until you have a child of your own. It hurts me to see how much my parents are hurting knowing that their child and grandchild are going through this and they cannot fix it either. 
We refuse to think that we are victims here. We are fighters and will do everything we can to help Cameron just as she works her little butt off everyday. We will be fundraising to help research a cure for Rett Syndrome. At some point, when I find time (between six therapies/week, appointments, and oh yeah, five weeks from having a newborn…ha!) I will set up a blog, as I have been documenting all of this for a long time and will continue to do so. 
Please know and believe that after we got over the initial suckiness (no other way to phrase it) of the news, we are relieved that we know exactly what we are dealing with.  Please know that we are extremely positive that this will be reversed and Cameron will be okay. Please do not feel sorry for us or act differently around us. We know that the best thing for all of us, especially Cameron, is to be around people.
We are hopeful that #2 will be the best therapy for Cameron. 
Our mind is set on Cammy Can.
Jackie, Billy, Cameron, and The Deuce

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