As a part of my desire to learn more about microcephaly, I have engaged myself in a new project. A couple months ago, Marcus's Aunt Arlene sent me an email with a website about a darling little girl with microcephaly. I looked through the photographs and read her story online. I then found a link to Foundation for Children with Microcephaly (FCM). FCM was started by this little girl's mother, Jenni, who wanted to create a support group of sorts for families coping and dealing with all the struggles that involve microcephaly. I was so excited to find this site. Jenni wants to hold the first annual convention for FCM in June 2008 where specialists, doctors, geneticists, etc will be there to speak with us about the condition, research, and resources. I immediately made a plan to attend.
I emailed Jenni right away and told her of my desire to get involved. I feel like this convention is so important to the microcephalic community, as distant as we all are from each other, and told her that I wanted to start writing letters to companies to try to raise money for it. She, of course, was thrilled that I wanted to do that. But, I wanted to do more. So, officially, as of Tuesday, I am the Utah State Representative for FCM. This means I am the contact person for anybody who lives in UT and needs help. I can make home and hospital visits if needed/requested. I help families know about services available to them. I contact pediatricians, neurologists, and specialists throughout the state to let them know of the foundation so if they have a patient with microcephaly, they can refer them to us. I also am responsible for fundraising. It's a great support system for these families. When we found out about Samantha, I would have loved to have a specific person I could contact to ask questions about what it's like to live with this, what to expect, etc. I'm so so very excited to be a part of this.
There is a link to the website on our blog. My email address hasn't been posted yet, but should be soon. BUT, Samantha's picture is on the website. Go to the website and you should see her on the page. You won't miss her!
I am just really grateful for the opportunity to be a part of this and help other families. I can't wait to get my first email, whenever that may be. In the meantime, I'm busy going to doctors' offices and writing letters.
If you are interested in donating to FCM, let me know and I can help you arrange that. FCM is a recognized charity, so it is tax deductible.