Fanconi Anemia Research Fund
Fight The Fanconi Anemia Fight With Michael's Army
My beautiful son, Michael, was diagnosed with a very rare life threatening illness called Fanconi Anemia. Michael was diagnosed at 10 years old and today, November 18th, 2013 he turns 15. The following is how these last five years have been for our family.
It's been five years since I heard those words...."the tests were conclusive that your son Michael has Fanconi Anemia".
Five years that I have lived with the idea of knowing that chances are I will outlive my son Michael.
Five years of losing other Fanconi Anemia children to this horrible disease.
Five years of people not understanding.
Five years of surgery.
Five years of my son being stuck countless times for blood work (sometimes weekly) and bone marrow aspirations.
Five years of wondering when the next shoe was going to drop.
Five years of learning, and loving, and fighting, and living in the moment....because who knows how many moments we would have left.
Five years of heartbreak.
Five years of not being the family we once were.
My son is a true trooper. Thru all that he goes thru, he never ever complains. He just rolls with the punches or should I say pricks from the needles.
Our Charity, the Fanconi Anemia Research Fund, is a non-profit organization that does research to hopefully someday find a cure for all of our children that are afflicted with this horrible disease Fanconi Anemia.
The only funds that the Fanconi Anemia Research Fund receive are from the fundraisers that our Fanconi families hold. That is why I am writing this story. To win this would really give a huge boost to the Fanconi Anemia Research Fund.
The pictures I chose to share are; first a picture of Michael and our family in his Make A Wish room mid-way thru. The second is a picture of Michael and his Fanconi Anemia doctor, which there are only three in the United States. The third picture is Michael in one of his many hospital stays. The fourth and fifth are at one of his blood and platelet transfusions. We tried to make it fun and incorporate a radio station contest to try and win a prize. Michael ended up winning! As you can see from the fourth picture, the nurses were great in helping Michael stay calm and going along with our attempts at winning the contest by giving Flat Stanley his own I.V., identification bracelet and mask.