Wednesday, February 16, 2011

Progeria: Angels sent to teach humanity to love a little deeper

Two adorable girls diagnosed with Progeria

Note: At the end of this entry I list the contact information for the Progeria Research Foundation if you want to help. There's no greater feeling than making a difference in someone's life. It's an even greater reward to make someone else happy.

Progeria is a debilitating, fatal, genetic  disease that cause children to age early, suffer from strokes, heart attacks and other symptoms atypical of old age.The average lifespan for children diagonosed with  Progeria is 13 years. According to the Progeria Research Foundation, as of December 2010 it affects 78 children worldwide. Children suffering from progeria lose their hair, teeth, develop fragile bones, tight skin,  stiff joints, have difficulty breathing, and some may have arthritis and osteoporosis. Despite their daily struggles and no cure, these children possess a passion and joy for life unequaled. They carry with them a spirit that transcends the most emphatic trifles and have touched people from all walks of life. Their strength and heartwarming disposition have inspired many to persist in their dreams. Their lives are a testimony that, indeed, your attitude impacts the way you live.

I first became interested in Progeria when I encountered a little boy dressed in a suit at Miami Airport in 2005. However, this little boy lookd more like an old man, but was  adorable. My mother told me that she believed the child had Progeria. "Pro...what?" I had never heard of it before. After research, the reason for my ignorance became clear. Progeria is an extremely rare disease, and therefore difficult to treat. The progeria gene was only discovered in 2003. Immediately I decided that for my Senior Seminar in highschool, I would try my best to raise money for little Lindsay and present on her. Since then my mother donates yearly.

If you take the time to watch their videos, hear their laughter, watch the way they tackle life, you'll suddenly pause and realize that your complaints are petty, that you can indeed fight a little harder. These kids never give up. While fighting their battles, the people around them fall in love with them. I wonder, what would the world be like if we had their spirit?

Old Age at 3, the story of Zachary Moore is by far one of the most awe-inspiring soul-felt books I've ever encountered. Written by his father, Keith Moore, we meet little Zachary, often called an angel, whose zest for life was an inspiration to others. He was born prematurely and as the months passed, he developed symptoms uncommon of a healthy child. His parents tirelessly searched and prayed for a diagnosis. Their researched unveiled numerous diseases that a child could have, and it was then that they realized what a miracle a healthy child is considering "the unhealthy percentage of children." As for little Zachary, at six months he developed symptoms  typical of Progeria, although his case was more severe. Daily his parents gave him physical therapy (at least five times a day) and tried their best to relieve his pain.  They invested their energy into making Zachary as happy as possible. He was their gift, and a gift to the world, and they cherished each day with him. 

There was much to learn from Zachary. Zachary's father recalls how daily, after he came home from work, Zach greeted him, yelling "Dadda!!!" with such glee. He writes:

If he is doing something he literally drops it and moves away to let me know he is ready for me and nothing else will get in the way. What a great feeling it is each day to come home to him... All relationships should be that way, but unfortunately that is not the case. There are high percentages of times when we cannot drop things and devote complete attention to our relationships. What we can do is prioritize what we should be devoting our attention to. Are two hours of television more important than our kids and spouse each evening?

How well do you prioritize your day? What is truly important to you?

Zachary approached life undaunted and made the most of it. His physical limitations never stopped him from trying, and he did not not allow excuses to detain him. Indeed, as Mr. Moore write, " We need to not focus on our limitations... Sometimes the worst situations present the best opportunities for growth."  Quite honestly, his words bespeak an inconstestbable truth. How often have we fallen into self-pity, told ourselves that we weren't strong enough, smart enough, good enough? How often have we allowed our fears to imprison us? It's best to forge ahead and give it a shot. You might fail, you might face rejection, but your strength comes from moving forward with lessons garnered.

Zachary's life may have been cut short (January 23, 2006), but he made a difference in the lives of others. How many can say that at two and three years old they gave people the strength to continue? stopped a man from committing suicide? inspired prisoners to maybe change their ways (some had up his picture on their cell wall) inspired others to love more?  Take for instance this beautiful passage and note the powerful mpact Zachary had on others:

Everywhere we go some person comes up and tells Zach they love him. Sometimes they tell him with those exact words and sometimes with their actions. It is a wonderful thing for Zachary and that person. Wouldn’t it be great if everybody treated children or even adults with that attitude? The attitude that they deeply care about this person and want to tell them or show them they love them because they may not get another chance. Do you treat your children this way? How about the rest of your family, friends, or even people you meet? It is a wonderful thing to see and be with Zachary and witness this everyday.

What if we could be a little more like Zachary?

How can I make a difference?Visit to learn more about Progeria, donate and/or get involved.

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Sand-Dollared Cataract by Sofia Mitchell is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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