The Story of Jadon
aka; "The 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 and on June 25, 2011, he celebrated his 2nd birthday! Significant milestones that far too many SMA babies never see. 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 unfold.
Tony & Kristin Burks
June 25th, 2009 July 2009 August 2009
1 month 2 months-Diagnosis
September 2009 October 2009 November 2009
3 months 4 months (G-tube surgery) 5 months
December 2009 January 2010 February 2010
6 months 7 months 8 months
March 2010 April 2010 May 2010
9 months 10 months 11 months
June 2010 1st Birthday July 2010 August 2010
12 months 13 months 14 months
September 2010 October 2010 November 2010
15 months 16 months 17 months
December 2010 January 2011 February 2011
18 months 19 months 20 months
March 2011 April 2011 May 2011
21 months 22 months 23 months
June 2011 2nd Birthday July 2011 August 2011
24 months 25 months 26 months
September 2011 October 2011 November 2011
27 months 28 months 29 months
December 2011 January 2012 February 2012
30 months 31 months 32 months
March 2012 April 2012 May 2012
33 months 34 months 35 months
June 2012 Jadon's 3!! July 2012 August (Trach surgery)
36 months 37 months 38 months
September 2012 October 2012 Our Little Gbug Nov. 2012
First Day of School 40 months 41 months
December 2012 New Sister January 2013 February 2013
Gracyn Jaye 43 months 44 months
March 2013 April 2013 May 2013
45 months 46 months 47 months
June 2013 July 2013 August 2013 School
4 YEARS OLD 49 months 50 months
Sept 2013 Parade October 2013 SuperBUG November 2013
51 months 52 months 53 months
December 2013 January 2014 February 2014
54 months 55 months 56 months
March 2014 April 2014 May 2014 Pre-k Grad
57 months 58 months 59 months
June 2014
5 YEARS OLD
Jadon's Smiles
June 25th, 2009
June 2010 -
FIRST BIRTHDAY
June 25th 2011
Jadon is 2 YEARS OLD!
June 25th 2012
Jadon is 3 years old!!!!
June 25th 2013
Jadon is 4 years old
June 25th 2014
Jadon is 5 years old
SUPER BUG
There’s a boy near you that has SMA
He fights this disease every single day
His little body is tired, tired all day
He is way too tired, even to play
He tells his story and he talks with his eyes
He came to this world to simply change lives
His parents aren’t doctors but they have a plan
They plan to keep him healthy, they’re his number one fan
They do cough cough coughs, and tap, tap, taps
There’s a machine for eating and a machine for naps
He sleeps with a pulseox and a bipap
If he was running a race it might be the last lap
His parents think it’s the machines that are keeping him strong
But it’s all of their love that he’s living on
They know how he touches THEM, but they don’t understand
How he touches others all across the land
You see, the answer is simply, He sneaks out
Sneaky he is, there is no doubt
If he could move in the day, he would give you a hug
His real name is Jadon, but they call him THE BUG
THE BUG will sneak out and fly far away
His job? Touch lives before the next day
He flies to help others, others in need
A super hero he is, a HERO indeed
You see life is too short but most don’t realize
So THE BUG swoops in and touches their lives
Some things don’t matter as much as they think
Their hearts have grown cold like a big ice rink
They think work is important, more important than all
The lives of their children can wait until fall
THE BUG shows them, right now is the time
While waiting isn’t illegal, it is surely a crime
You don’t know how long you have, so live for the day
Come home early and make sure that you play
Live every minute like it’s your last
Surely then, you’ll be having a blast
He helps them out of the hole that they’ve dug
He shows them how to live in care of THE BUG
Some who hear the story will not make a change
But for those who do, their old lives will seem strange
Once he melts their hearts and makes an impact
He sneaks back out ‘cause the cards have been stacked
He flies back home and slips into his crib
Puts on his mask and positions the bib
His parents planned to show him how to love and to give
But THE BUG showed them how it is they should live
So while some day, he may go away
His love to be forgotten, there is no way
He came to them from heaven and may have to return
They will never forget the lessons, he caused them to learn
So grab your family and wrap them in a hug
For the lesson today came from THE BUG