The hardest part of having a child, or in our case children, with a rare disease is that all we want to do as loving parents is help our little girls and we don't know how or what do to. No one can help us because no one knows any better than we do what is the matter.
Cali and Ryann have the most beautiful knowing eyes. They shine with love and purity. Everyone who meets them falls in love with them. You feel loved when you are with them. They are truly angels sent to our family to bring us a message. A message that life isn't all about ME. Its about raising our sweet daughters to grow up and be the best they can be. Life is about passing along what we have learned to others after us to make our world a better place.
We are all faced with a huge problem. There are children being born everyday with new unknown rare diseases and we don't know what the cause or how to stop it. Its unfair and frustrating that we do not have enough attention and therefore funding for research to find some answers. We are the floaters in the world of diagnosis. ITS TIME FOR A CHANGE!!! Its time to bring awareness and its time to find answers.
Cali and Ryann work so hard to do the simplest things. Cali wants to run and play with her friends. She wants to talk and express herself. She wants to sing the words to her favorite songs. Ryann wants so badly to crawl. She pulls and fights with all of her might to do it. She wants to call out Mamma and Sissy and Night Night and Bye Bye. Our little girls cant do these simple things that come naturally to our sweet Raelyn. We are so lucky that Rae is the best little and big sister of all. When she says her prayers or makes a wish she says "I wish everything to be ok with my sisters". At four years old she already knows and wants the same as all of us that know and love Cali and Ryann. We want everything to be ok too. We want our little girls to do those simple things. We have to find answers and help. We have to keep searching and trying our best to stand up and say IT'S TIME FOR A CHANGE! IT'S TIME FOR ANSWERS!
I have been posting about Pepsi's amazing gift. They are giving away $1,000,000 to the best ideas that can make our world a better place. Children's Rare Disease Network has submitted our fight for a change, our quest for answers. Vote4Hope is in the running for $250,000 for funding for research for children with rare disease. It's a small step for a big reward. I know that I have been voting everyday and I have been reminding everyone to do so too. Its these opportunities that give us the chance to contribute whatever we can to make a difference. Please remember to text 102614 to 73774 for your vote everyday for the month of September.