All For The Bug!
JADON BURKS
"Bug"
On June 25, 2009, we were blessed with a miracle. Jadon came into our lives and captured our hearts the moment we saw him. It was love at first sight! Jadon was perfect - 10 little fingers, 10 little toes, a winning personality (we could already tell!) and the most beautiful blue eyes. From the start, Jadon was a happy baby. Rarely did he cry or fuss - he just took life in stride. Little did we know how important this would be.
At about 6 weeks of age, we began to notice that Jadon wasn't moving his arms and legs as much as when he was born. Although this concerned us, we weren't overly concerned as we had heard many times that babies develop at their own rate. We just thought that Jadon was one of those babies, but at the suggestion of a Physical Therapist we decided to take Jadon in to Children's Mercy Hospital in Kansas City to be checked out. After a very lengthy appointment, the doctor said she wanted to test Jadon for Spinal Muscular Atrophy. Spinal Muscular what? We left the hospital fearing that Jadon would never walk; it wasn't until the next day that we learned the true reality of this disease - we would lose him.
On August 25th, Jadon's two month birthday, our greatest fears became a reality. The test results came back positive - Jadon had Spinal Muscular Atrophy. Given the onset of symptoms, he was affected by the most severe form - Type I. In the blink of an eye, our world was turned upside down and inside out. Learning that our precious bundle of joy had a life-threatening disease was heart-wrenching and incomprehensible. Over the course of the following days and weeks, we armed ourselves with as much information as possible while also trying to come to terms with a roller coaster of emotions. We were learning to pick up the pieces of what seemed to be brokenness and rearrange them for our new journey.
During that time, we had to make some very difficult decisions. Decisions that no parent should ever have to make in regard to their child. It's a very fine line between balancing a good quality of life for your child while also making sure the decisions made aren't for selfish reasons - that is keeping them here because you can't let go. As you can imagine, we encountered many tearful days. We wanted Jadon to have a full life. One where he was comfortable, but more importantly, one filled with lots of love. And love on him we did!!
On June 25, 2010, Jadon celebrated his 1st birthday! A significant milestone that far too many SMA babies never see. This past year, Jadon has taught us so many lessons, more than we could have ever dreamed of passing onto him. Despite everything his little body goes through, he is always smiling and those beautiful blue eyes - well, they tell stories wise beyond his years. Jadon has taught us grace through adversity, how to face tough and insurmountable odds, but most importantly, he has taught us that love truly does endure all. Jadon is our HERO and inspiration. You see - we have quickly learned that heros aren't always people you look up to, but rather gaze down upon because they can't stand for themselves. Because of Jadon, we are forever changed.
We are so thankful for each day we get to spend with Jadon and pray for thousands more. We know that there is an amazing plan and purpose for Jadon and are blessed to be by his side as the chapters of his life begin to unfold.
Tony & Kristin Burks
To learn more about Jadon's Smiles and Jadon's Miles (his journey with SMA and daily care routine), we invite you to check out:
- SMA is a genetic recessive disease that kills more babies than ANY other inherited disease. It is the number one genetic killer of children under the age of two.
- SMA affects the voluntary muscles that are used for activities such as crawling, sitting, walking, eating, breathing and swallowing. The mind and spirit are no different from that of a healthy baby, but the body eventually fails.
- 50% of SMA Type I babies don't live to see their 1st birthday.
- 80% of SMA Type I babies don't live to see their 2nd birthday.
- 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
- SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity or gender.
- There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) selected SMA as the disease closet to treatment of more than 600 neurological disorders.
- Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years - IF provided adequate resources and funding.
- Because scientists know so much about SMA, it is considered a "model" disease with direct impact on research into many other diseases potentially benefiting millions of people.
- The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
