Rare Disease Day 2015

It seems like February creeps up so quickly every year. It means we are closer to Spring and warm weather, we did our 65 Roses Fundraiser, Valentine's Day, and Rare Disease Day is Saturday Feb 28th this year. I never knew what a rare disease was, and I say this not proudly, but nor did I care a few years ago. I was in a, "life is perfect, life is beautiful, nothing bad ever happens" type of world. I wish someone would have informed me about some rare diseases, how to learn about them, how to bring or raise awareness for them, and how to support someone who was going through something like this. But, no one did. So I'm going to be that person, and inform you, and probably tell you more than you want to know, but knowledge is power, and maybe by sharing some of these things with you that you may not know, you will one day be able to help someone. Or even be there for someone. Rare diseases suck. They suck because with 90% of them, you will hear the word fatal. Fatal means the person will die from it. There are miracles and there is an awesome God who has he final say in it all, and after all, a statistic is just a number. The word fatal tends to stick with you though. Our Zoie has two Rare Diseases. Cystic Fibrosis and Microcephaly. The odds are slim for a kiddo to be diagnosed with two, but it happened, and it happened to a pretty spectacular litte girl. Both of these are not caused from anything that I did while I was pregnant, or before I got pregnant, or after Zoie was born. They are both genetic in Zoie's case. This means that Derik and I, are both carriers of a CF gene, and a Microcephaly gene and we both passed them both on to Zoie. Sometimes I feel so bad, and I feel like it's our fault. I know deep down its not. We had no idea, and quite frankly I wouldn't change it because Zoie is our Rae of Sunshine. I couldn't do life without her. Cystic Fibrosis is a lung disease. It's fatal but the life expectancy is up to 37 years old. We can tell when Zoie sleeps that she has CF because her breathing is loud, and she is always trying to cough up mucus while she eats. Mom her three-year chest scan, her lungs were perfect. We are praying for the same in a few months for her four-year scan. Microcephaly is a little bit more rare and isn't always genetic, although Zoie's is. It's also more of a touchy subject for me to dig into so bare with me. Microcephaly means "small head." If you have ever wondered why Zoie looks like Zoie, this is probably why :) her hair does a good job at disguising it, but she can wear size 6-12 month hats just fine. Petite head she has. Microcephaly has such a huge range of "what can happen during this persons life span" that its kinda like living the unknown. It causes seizures, CP, mobility and learning difficulties, speech issues, and the life expectancy with Micro is very young, but that's also up for God to decide. When we first met with Epilepsy when Zoie was around the age of 1, they told us she may only live to be 3. That number stuck with me. I pray no one ever has to hear that your kid may only get a few years.... It's a pill you never really swallow. It kinda lingers on your tongue until you hit that 3rd birthday and then you start celebrating half birthdays, because you don't know how long you have with your kid. I truly believe, and I don't say this to make myself or my husband feel better, but I know Zoie has some years in her. I can tell. She is amazing, and happy, and smiles, and is hitting some of the most wonderful milestones. We aren't sure what the Microcephaly age will be for Zoie, but we sure are enjoying her and are looking forward to celebrating a 4th birthday here soon. So, now that you know about some rare diseases and you probably know us somehow, I would love for you all to join us in celebrating Rare Disease Day by wearing our color, purple :) Zoie loves purple, amd it's the CF and epilepsy colors. Wear purple on Sat to say that you support, are learning, or know someone with a rare disease. I love to see pics so please hashtag them to, #fortheloveofzoie. I enjoy sharing, rather than having people wonder, so thank you for letting me share my heart and my family. Here's to 4 more years of being rare <3