3 words that will forever change my life, the people in my life, and the way I feel about so many things.
7 years ago I learned 3 new words. These words combined form more than just a rare genetic condition. They have a meaning to myself and the select group of people that have also been introduced to these words.
Learning how to say these words was a challenge at first, but understanding what they mean will take a lifetime.
The first day that any parent learns of any condition that their child has, or could possibly have, you immediately become AWARE. Aware of the what could, what will, how it does and can affect you, your family and most importantly your child.
You wonder what will happen. Will they have it forever? How do they get rid of it? Will they live to be 100? Will they live to see tomorrow? What happens if they don’t get the medicine? What happens if…. The questions go on and they never stop.
Because of my children, I am a better person. I am more AWARE. I am more aware that there are so many other rare conditions that children are born with or will end up having. For any rare condition, having AWARENESS if half the battle. If your not aware, it doesn’t exist. But it does.
Today, 7 years ago, I was made aware of a condition called Congenital Adrenal Hyperplasia. I will forever have the day permanently etched into my memory. I made a promise to Jake that I would fight for him and this condition. Awareness of the condition is the first step.
Most of our friends know about what CAH is and that 2 of my 3 children have it. I always like to say that we got lucky getting this rare condition. My kids are healthy, happy, and full of life.
Thank you to all our friends and family who support us in just being aware of what our kids have. There is much work to be done on this condition. 1 in 16,000 children are born with CAH. Medicines and technology are constantly evolving. Laws still need to be written that will directly effect MY kids. I am only one person, but as any parent would, we would walk to the ends of the Earth to help our children. I do my part and wanted to thank everyone for doing theirs. Just knowing that others know about CAH means more than you will ever know.