As I look towards the coming year, I cannot help but look back at 2011 as it finally comes to an end – 2011 was a year of both despair and miracles for my family.
This time last year we were waiting to get to Dr. Tinkle to get an official diagnosis of Ehlers Danlos Syndrome and we were watching our daughter get worse, day by day. As we headed into 2011, Em’s neurological symptoms got worse and worse and we had absolutely nowhere to turn for help. Her decline was rapid and terrifying. The ‘autonomic’ symptoms started in August and the neurological symptoms then hit with a stealthy vengeance that annihilated her quality of life in a matter of weeks. In December and January she was feeling worse as each day passed. I remember researching Chiari in early January and, with a sinking heart, becoming convinced that her symptoms fit; if it wasn’t Chiari, it was most likely cervical instability, which was equally as terrifying. By February, she was in bed more and more, unable to function. By the end of February, she was spending all of her time in a darkened bedroom – in severe pain, severe headache, severe light and noise sensitivity; so dizzy she could hardly sit up, so nauseated she could barely eat.
We finally saw Dr. T and got a diagnosis, which was a huge relief. But, even with that, there seemed to be no firm answers about the neurological symptoms – although, Dr. T and the neurologist both agreed Em most likely had cervical instability. I started preparing myself for the idea of a fusion surgery and tried to prepare Em as well.
In early 2011, we hit bottom – we were in a deep, dark valley where despair stalked us and never left our side.
Heading into 2012, we are now full of hope. How could we not be hopeful, when we have been granted our very own miracle? In June 2011, I got a glimmer of hope when I happened upon the Driscoll Theory. I did a lot of research, I compiled information and gathered our personal ‘evidence’ and finally knew it was the answer. The next months were challenging, as we embarked on a futile and frustrating journey to get our doctors to consider the Driscoll Theory. But, we eventually prevailed and we got our miracle.
So, instead of a couple neuro surgeries, Em got a couple medications – Diamox and Zyrtec and Zantac – that have made all the difference and given her back her life. And now, as we head into 2012, she is going to be able to live a semblance of a normal life. She will be able to work on her physical and occupational therapy to strengthen and stabilize her joints. She is going to be able to do her school work and start catching up. She has a chance of being an almost normal 13 yo girl.
I learned many valuable {HARD} lessons over this past year and I am ready to take on 2012. I know my daughter’s life will always be challenging but I have hope that she can and will continue to get better.
Because of Dr. Diana Driscoll, the people living with EDS have hope and have the possibility of safe, effective treatments for some of the worst of their symptoms.
2012 is looking very hopeful indeed! Happy New Year to all – may the coming year bring peace and hope and health to each of you!
