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



Jadon's Smiles

June 25th, 2009

June 2010 -

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 



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