Macy

Macy

Saturday, April 30, 2016

Fanconi Anemia Awareness Day-May 1 2016


This is a picture of our daughter Macy. She's 5, and wants to be a Dentist when she grows up. Macy has a very rare genetic disease called Fanconi Anemia (FA). It's a very complex disease, but in a nutshell her body cannot repair DNA damage. This means every day things she's exposed to (like radiation from the sun, chemicals in clothes/the air, second hand smoke from a passerby, and even the by-products of natural cell turnover in her own body) are killing her. 
Kids with FA usually go into bone marrow failure by the time they reach 10 years old, thus needing a bone marrow transplant. This is NOT a cure. A lot of children with FA do not reach adulthood. Those who survive transplant often get cancer in their teens and 20's that the general population get in their 60's+ . Because they cannot handle high doses of chemo or radiation (meaning it will kill them) needed to fight cancer, they don't have many/if any treatment options. Macy wants to be a Dentist when she grows up. If we don't find a CURE there is a really good chance she won't live long enough to be the age I am today. This is HER reality. This is OUR reality. One of the challenges about "a very rare disease" is since most people have not heard of it it means they are NOT personally affected by it. It means they are NOT emotionally affected by it. It means they DON'T donate money to help find a cure. May 1st is International Fanconi Anemia Awareness Day. Our small group of families from all over the world are asking to please help us find a CURE for FA. Please help Macy have the chance to become a Dentist, or anything else she wants to be. Please take the $10, $5, $1 that you would normally spend today on something that DOESN'T matter, and spend it on something that DOES matter. Because Macy and all the other kids with FA deserve a chance to live. 
♥️ Please go to Fanconi.org and click on the donate button in the upper right-hand corner to donate❤️ OR you can text the word FANCONI to 541-515-7332 and you will be sent a link that brings you to a secure online form to make your donation. If you would like your donation to remain anonymous there is a box you can click that provides that option as well as an option to make your donation in honor of someone (aka: Macy). No donation is too small. All donations are tax deductible. 
Thank you
Jenn

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