everydayisamiraclelogo
call
donatewithcreditcard
donatebycheckorphone
home ourstory donate contactus

 

Everydayisamiracle.com - Created by 15th Street Films

Dear Visitor,

Please let me open this letter by saying that the Sikorra family is amazingly blessed by this community of friends. Your endless words of encouragement, prayers, laughter and all that you do are what keep us together. Thank you.

When you wake up one morning and get the call that your seven year old son has a terminal illness called Batten Disease, immediately every day becomes a miracle.

Our life began as any other young couples’ life. First comes love, then comes marriage, and then comes baby… Our life was full, exciting, blessed. We had a loving marriage, a great home, an amazing community of friends and two beautiful children, John and Ben. Then one day John says, “I can’t see the baseball,” and life changes. How does such a simple statement turn your life upside down? Well, the statement doesn’t, but Batten disease does.

At age seven, John attended Catholic school, played soccer, baseball, rode his bike, read books and loved his movies. His life was that of a normal seven year old. As John turned eight, he no longer attended Catholic school, or rode his bike and was unable to see well enough to read books. How quickly a little boy’s life can change due to a silent killer called Batten. At age 13, when a boy should be entering his teenage rebellion years and hanging with his friends, he spends more time at home due to his seizures and increasing difficulty communicating with children his age. His life becomes smaller and more isolated.

High school arrives and his dream comes true to attend a Catholic High School. But with high school comes more seizures and decreased ability to learn and communicate. He realizes that his friends are driving, going on dates, playing sports, going to movies together - and he is not. The talk of college is in the air and for the first time, John states “I’m not going to go to college. It will be too hard.” At age 18, John acknowledged for the first time that there is something too hard for him….John continues to rise to meet life’s challenges. He water and snow skies, has played soccer and baseball blind, flown across the country by himself, altered served at Mass, and yes, even driven his Dad’s jeep.

When John’s diagnosis was made, so was the awareness that Batten is genetic. What makes Ben’s genetic make up any different than John? None. Ben was 4 when we received his diagnosis through genetic mapping. A perfectly normal, beautiful, smart, coordinated young boy was heading down the same path as his older brother. Unfortunately for Ben, he is aware that they have the same the disease and his life is heading in the same direction as John’s. Ben maintains a healthy level of denial, however. He tells John he will drive him to the movies when he is sixteen, while at 13 Ben is unable to see past his nose. Ben will not allow Battens to dictate to him what he will and won’t do….Both boys live life adventurously! In the end, Joe and I believe Jesus will conquer. These two boys continue to teach us more about the God’s love, God’s grace and His mercy. Everyday is a miracle with John and Ben. We’ve all heard that the key to living joyfully is to stay in the moment. Well, we do our best to heed that call - and we encourage you to do that as well!

Thank-you for spending a little time with the Sikorras. If you would like to learn more about Batten disease or help us find a cure/treatment, please visit BDSRA.

Thanks,

The Sikorras