Life as a "Zebra", When things Become Personal

For anyone who took a glance at my profile, you can tell I have a complex story. My DX. range from Ehler-Danlos and Aneurysms/Vascular Anomalies to Narcolepsy and Autonomial dysfunctions. I have multi system malfunctions and a high rate comorbidity with primary and secondary conditions. So.e less severe than other while some have been life threatening and changed my life forever.
However, tonight or well better yet this morning; I am stuck lying here awake at a mere 3:59 am with a brain that is not my fire d at the moment. See, I am strong, I know I can handle anything that is thrown my way, maybe not initially but I do find a way to cope. It’s just lately, my struggle got a little more personal and has become more than my own!
I have a beautiful little girl named Caoilainn (kee-lynn), who is only 2 bit will be 3 at the end of June. Tomorrow May 21, 2014 we go to meet her sleep specialist. They think she has Narcolepsy. Beyond this,when I come back from U.VA, we will be scheduling her appointment to see a Rheumatologist. They said she has Ehler-Danlos Syndrome too. To top it off, we are tako g her for Psych evaluation because since the age of 6 no this she has had a texture aversion. It used to be so severe that every time she ate, she would literally choke on her food because she wouldn’t chew it. It is not this bad now, however the doc says she displays clear signs of OCD. How can a 2 almost 3 year old be OCD?
Anyway, as you can see from all of this; I have a very heavy heart right now. No parent wants to take their child to the doctor for being sick and even more so for things you know are life long. I am especially scared of the Ehler-Danlos Syndrome. I go for my genetics testing soon, but they think I have type 4 (the vascular form).
Thank you for letting me vent and for reading this. If you have any advice, please feel free to share it with me. I am so lost on all of this.

I'm so sorry for all your worries about your little one, Kristin. What you have to think is that things will be better for her than for the previous generation, because they will be. Gene therapies and new medications and all sorts of improvements are on the horizon. Courage, and get through genetic testing on both of you. You each may illuminate the other's genetic problems.

I am so sorry Kristin that Caoilainn has such worrying symptoms but as dancermom says the research now being carried out will mean more help available for your little girl than was there for you.
I can’t advise except to say that as parents we suffer our childrens’ illnesses more than they do and you will find the strength to help her through.
With love x

Kristin, how are you and your daughter doing? You really are a zebra; my counselor calls me one, too. Did you get the information that you needed from your doctors? Thank you for writing at a time when you had so much on your mind. Best wishes to the two of you.