For the past few days, I haven’t been myself. Lindsay Ratcliffe, Kaylee Halko and Hayley Okines are now forever embedded in my heart and I will never be the same. After viewing their stories on ABC’s 20/20 over the past weekend, I haven’t been able to get them off my mind. All three of these beautiful little girls suffers from a disease called progeria which is so rare that only about 65 people in the world are currently known to have it. Progeria is a cruel disorder that causes a child to age much more rapidly than normal—about eight times the normal rate in fact. A child with progeria who reaches the age of 10 is biologically closer to their 80s and at least 90% of children with progeria will die from a heart attack or stroke long before any of us ever have to worry about such a demise. I can’t imagine being the parent of a child with progeria and constantly living in fear that today may be my child’s last day.
What really touched me most about Lindsay, Kaylee, and Hayley was seeing how happy they all were despite their circumstances. Their bright beautiful eyes showed no signs of dismay and they laughed and played just like any other kids their age. When I think about it, these kids are really my heroes. Their zest for life isn’t diminished one bit by the hand they’ve been dealt. Nevertheless, I’m heartbroken knowing that there is currently no cure for their condition and they may very well be outlived by their loving family members. Nothing I have ever seen on television has had as great an impact on me as seeing the story of these children. I’ve decided that no matter what I do with the rest of my life, I have to devote a certain portion of it to furthering the cause of kids like them by educating others and raising funds to help find a lasting treatment or cure for this terrible disease.
Unfortunately, because progeria is such a rare disorder, it doesn’t get as much scientific funding as some other commonly known childhood diseases. Please donate to the Progeria Research Foundation. Even if it’s something as little as 10 or 20 dollars. They are doing great work learning more and more about the complexities of progeria and a breakthrough could be just a fully funded study away. Some of the research they are doing concerning progeria has already added to the scientific community’s knowledge about the aging process for humans as a whole and opening new insights into heart disease. If you do decide to donate, please accept my heartfelt thanks and appreciation. Anything we can do to give these kids a chance at a longer life means the world to me.