Rare Disease Awareness

This week is Rare Disease Awareness week. My youngest son, Pants has a microdeletion 16p11.2. Some of my fellow 16p Moms have posted on Facebook welcoming questions and comments regarding their children's condition. I thought to post the same, but I know I have bombarded my friends and family with the details of Pants condition. I have been wondering what I can do this week to bring awareness and the thought came to me this morning that maybe I should tell people why awareness is so important. 
I was told by a cardiologist while my Pants was still in my womb that he had severe heart defects. As if being informed that he would require many heart surgeries wasn't enough, she threw in the word "syndromes". You see, heart defects are a huge indication that a syndrome is involved. 
I cried as my doctor performed my amino and his nurse held my hand. I didn't want it done...I didn't care if he had a horrible syndrome. I didn't want to hear my "options" if the amino came back positive. He was my baby. He would be perfect to me. The amino came back with no known syndromes. And no one talked about syndromes after that..we'll until my Pants was born.
Pants was born five weeks early via emergency c-section because I was hemmoraging. They quickly took him away from me and bombarded me with the huge list of physical reasons why he would not make it. As I struggled to get out of my bed, Pants cardiologist came in and helped me into a wheelchair. 
"Grace, (by this time his card and I were on a first name basis) they said he's broken. They say he's going to die..." She quietly showed me his x-ray. My heart broke when I saw his deformed spine and as she went on to mention cleft palate, facial and other deformities. 
The next morning I went to the children's hospital to be with my baby. For a week, I was told they thought he had a syndrome called Triple C. If he had this syndrome, his quality of life would be nonexistent and since he was barely hanging on, I should consider letting him go. 
I hated his genetic doctor. In my mind, he was the reason Pants doctors were considering giving up on him. The genetic test results came back negative and the doctors became quiet about syndromes and focused on Pants getting better. 
Months went by and I knew I couldn't ignore that Pants had some kind of syndrome. I took him to get tested again, but the test did not find anything.  
A year and a half went by and I got the courage to take him to see another genetic doctor. At this point, I wanted answers. I wanted to know what to look for. Many times, Pants would come down with some kind of illness that the doctors couldn't understand why. 
The new genetic doctor sat me down with his test results.
"Your son has a microdeletion on his 16th chromosome. The reason this didn't show up on his previous tests is because this test has just recently been created. The problem with this is there's only around twenty five cases reported in the world. I can tell you what he has but I can't tell you what this means for your son."
I cried and I was pissed off. It all seemed like a cruel joke that would never end. 
One day, while I was researching his syndrome, I found a mother who had a daughter with the same syndrome. She created an online support group. The mothers started sharing their children's conditions and obstacles. Our group slowly grew, along with vital information about our kids. I found myself informing Pants doctors of his condition that I learned from my fellow Moms. I had Pants checked for conditions that could be a problem for him down the road. Information is power. 
I see new Moms joining the group regularly and it saddens me for the fact that they have to go through this but for the most part, I'm thankful that they have a place to go. 
So looking back, I see the need for awareness because no mother should ever be put in the situation where she is told she is alone, she doesn't have answers but frustration, and she should give up hope and just give up.
And a final note to my fellow.16p Moms, thank you for your strength and love and your determination to not only help yourselves up but to help those who come behind you.