Jadon’s Hope Bug Run

On April 1st, KindCraft will support this handsome guy in a “Bug Run”.  KindCraft is partnering with Jadon’s Hope by providing race guides for both the 5K and 10K races.  Jadon’s dad, Tony Burks, wrote this blog to tell us a bit about their nonprofit organization Jadon’s Hope Foundation and how it came to be. We all appreciate any support you can offer!  Please visit KindCraft events on http://kindcraft.org/jadons-hope-the-5th-annual-bug-run/ and sign up to either run or be a race guide!


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On August 25, 2009 we received the phone call confirming Jadon’s diagnosis of Spinal Muscular Atrophy.  It was less than a week earlier that we had heard those words for the very first time. However, by the time our phone rang on our son’s 2 month birthday we knew the severity of that confirmation.  We already knew that Spinal Muscular Atrophy (SMA) was the #1 genetic killer of children under the age of two.  Over the course of the next few months we would be told that Jadon has the most severe form of the disease, type1.  The doctors pointed out that Jadon was even weaker than most with SMA type1 and attempted to prepare us to lose him in less than a year.  Only 10% of type1 children live to celebrate their 2nd birthday.

We educated ourselves, traveled to Madison Wisconsin to see an SMA specialist, and we prepared for a fight.  We prepared to fight for his life.  We didn’t know what his future might look like and we didn’t know how long we would have him, but we vowed to fight for Jadon, to fight for our son.  We decided we would “Dance in the Rain” of this life storm as often as we could.

There have been some very dark days and far too many tears to count.  We had never imagined darkness the likes of SMA, but they say the smallest light shines the brightest in the deepest darkness.  It was the kindness of others that continually broke our darkness and truly kept us going.  

We have been blessed to be surrounded by amazing people here in Olathe, our online SMA Family, as well as our own families and longtime friends.  Because of Jadon we have been introduced to some incredible people and seen some ridiculously good things.  

In 2012 we formed Jadon’s Hope Foundation, a 501(c)3, to help others who may or may not have the same support system we have been blessed with.  By spreading awareness and helping others Jadon’s Hope Foundation has been able to make a positive impact on our SMA community.
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Jadon has defied the odds and will turn 8 years old in June.  If you are keeping score, that’s 7 years longer than they told us we would be able to hold his hand, rub his head, and listen to his little coos.  We are over the moon in love with this boy and will continue to fight for him as long as we are allowed.  With the foundation, we will fight for families all across the country.  In 2016 Jadon’s Hope Foundation was able to provide iPads, positioners, equipment, devices to help with movement, swings, and special beds for families who can really use them.

 

On December 23rd the FDA approved the first ever treatment for Spinal Muscular Atrophy.  The drug is called Spinraza and it has shown astonishing results in children beginning dosing as newborns.  We are truly witnessing a miracle as Type1 children on the treatment are walking.  It is unclear exactly what impact it might have on Jadon and we are not pursing it at this time.  However, it is incredible to see the SMA world changing right before our eyes.  Jadon’s Hope Foundation will continue fighting for families until the disease completely cured. 13064522_10154296394076162_1401809446814730872_o

-Tony Burks, Jadon’s Hope Foundation