This is my baby in her Moroccan dress she picked out at Disney!
I love to share my baby's story with the world in hopes of learning more about her cancer and ROHHAD and in hopes of helping other families going through similar situations with their children. But what I want to share with everyone tonight is a few other kids that are near and dear to my heart. They are constantly in my head - I feel the pain their families are going through and I can see the fight for life in these children.
Every day is a struggle and every day is another worry of what might happen to our children. These children have taught me so much and have become part of my family. There are so many children out there that just can't enjoy being a child. These children are very important to me and we have grown together over the years.
Many of these children have their own web sites but may not be known to most of Haven's fans. I like to take time sharing them with you and letting you learn about them.
ROHHAD children do not have a foundation to go to for support - we are our support system. You are our support system. Some of these children do not have ROHHAD but have cancer and other illnesses but they have a strong fight for life.
We aren't asking for money or charity events - we only ask that you learn about our kids and see life the way we see it and more importantly the way they see it. Some are able to go to school and some get to go when not sick. A small cold with sniffles should be easy but our kids end up in an intensive care unit and stay locked up for weeks at a time. Those in school miss weeks at a time - maybe attending only half a year total.
When you look at our children's sites it gives us strength to keep up the fight. It gives us hope and let's us know you care. Your comments are welcome and encouraged. You may think it doesn't mean much but it means a lot to us.
ROHHAD does have a support group on Facebook and I urge you to check it out and join! You don't have to have ROHHAD to join and you don't have to have ROHHAD to offer suggestions. Believe me - we're so consumed by this disease that we might be missing something. Please join in the conversation - give us some homework - make us think! We are missing steps here - we feel like there is a piece of the puzzle missing and maybe you know what it is! The moms look at the members and you can't imagine how much you joining our site reinforces our fight!
I will add the links soon to the children's pages with little updates - many you have seen before and some are new to our family! We love them all and couldn't do this without each other to cheer us on.
As my dear friend Scottie says keep "Living The Dream!"