The 7th Annual BUG RUN was held on March 30th, 2019. The temperature at race time was 34 degrees and it was snowing (But it was better than rain).
Jadon Smiles
It was our intention to give away 20 of these amazing swings but with over 80 responses we felt inclined to add another 10. SO WE ARE GIVING AWAY 30 SWINGS! We sure wish we could give one to everyone.
Entries were taken from a link posted on Facebook and then recipients were chosen randomly using Random.org.
The 30 recipients are below.
As witnesses to the degenerative cruelty of Spinal Muscular Atrophy (SMA), we founded Jadon’s Hope Foundation (JHF) in honor of our son Jadon (aka “The BUG”.) Jadon was diagnosed with SMA at two months of age and we will celebrate his 9th birthday on June 25, 2018. JHF’s mission is to promote SMA awareness, fund research efforts and support families just like you that are impacted by and fighting this cruel disease. Shortly following his diagnosis, we were given the phrase “Life isn’t about waiting for the storms to pass, It’s about learning to dance in the rain.” This has become our mantra. Our battle cry. And we hope others facing the raging storm that is SMA will also learn to “Dance in the Rain.”
Jadon’s Hope Foundation is 100% volunteer based, so all fundraising efforts go towards supporting our mission and funding the many programs we are honored to be a part of. Since Jadon’s diagnosis, we are proud of the opportunities we have been involved in to support the SMA community:
- Over $50,000 donated to help fund gene therapy research
- Funding support partner for the Gwendolyn Strong Foundation “Project Mariposa”
- Purchasing 35+ pieces of adaptive equipment for the Cure SMA equipment closet
- Funding twenty Angel Arm wishes through Jacey’s Journey
- Providing medical supplies to SMA families
- Funding gift cards to SMA Medical Supply
- Partnering with Getty Owl Foundation in 2016 to provide 20 platform swings
- Funding projects to make homes and vehicles accessible for use
- Granting fluidized positioners through JHF “Snug as a Bug” program
- Granting 5 customized high-raised beds through JHF “Bed of Hope” program
- Helping fund doctor/medical specialist visits
- Providing financial support for Celebration of Life services as families say good-bye to their precious ones
We invite you to learn more about JHF at http://www.JadonsHope.org. Make sure you keep up with foundation updates by Liking our Facebook page – Jadon’s Hope Foundation. Please post pictures of you using your new swing to our Facebook page; our supporters love to see all of Jadon’s amazing warrior friends! If you have any questions, please feel free to contact us directly at jadonshope@sbcglobal.net.
Again, congratulations on to our 2018 Summer Swingin’ program recipients!
Not Pictured – Jericho Chadsey
Life isn’t about waiting for the storm to pass,
It’s about enjoying a good swing.
6th Annual BUG RUN held April 7, 2018.
Each and every year we are blown away by the amount of support we have for the BUG RUN. It truly warms our hearts to see people jumping on board to support our SMA community and our little hero, Jadon “The BUG” Burks. However, this year’s race was nearly the race that wasn’t. With a winter storm in the forecast (IT”S SPRING!!! Buuuuuuut) the city needed to make a decision on our race.
Within the window of uncertainty we couldn’t help but think of all the hard work that went into a day that potentially wouldn’t happen. We couldn’t help but think of those who were planning to run their first race, and those who would “run for” an individual with SMA. We couldn’t help but think of all the many volunteers that set that day aside to help spread SMA awareness. The hardest part was considering the fact that our committee had worked ALL YEAR for a race that might not happen. Planning for the BUG RUN starts nearly a year in advance. (We have already had a meeting for next year’s race.)
Our committee is completely incredible. Our “Amazing Race Director” (That’s now her official title) Amy Vrban keeps us all organized and everyone does their part with such dedication and enthusiasm. We are truly humbled.
We want to give a big THANK YOU to our incredible committee
Amy V.
Heather A.
Michele L.
Cathy L.
Melissa C.
Jennifer S.
Holly H.
Melissa H.
Joanne B
Kristen W.
Tiffany S
John E.
It was futile to think we could control the weather, but we could pray, and that’s what we did. The forecast began to change and the 90% chance of possibly 3” of snow became a 5% chance of a trace of snow.
THE RACE WAS ON!
IT WAS COLD!
IT WAS REALLY REALLY COLD!
Did we mention that it was COLD?
BUT IT WAS DRY.
The week leading up to the race was possibly more stressful than other years, but possibly it was even more rewarding. We were relieved to simply have the event.
Despite the cold, the racers showed up to race.
DJ Ty was there to spin some tunes and help us keep things moving.
The kids showed up to sing the national anthem.
The city was there to keep us safe and we had ourselves a BUG RUN.
We hope the 6th annual BUG RUN will be the coldest we ever have and we hope it never rains but the only forecast we can be sure of is this: If there is a BUG RUN, there is good in the world.
THANK YOU ALL SO MUCH.
SEE YOU NEXT YEAR AT THE 7TH ANNUAL BUG RUN!
The BUG RUN was held on April 7th 2018. This was the 6th annual race by Jadon’s Hope Foundation.
More pictures here:
https://runandshootphoto.smugmug.com/Jadons-Hope-Bug-Run-2018
Race results here:
https://runsignup.com/Race/Results/38722/#resultSetId-110749
Jadon’s diagnosis ripped our dreams up into tiny little pieces and tossed them to the wind. SMA took our dreams and left us to hope for things that were merely expectations prior to those 3 letters entering our lives.
We have dreamed about milestones like living to be six months old, a year, and then two years. Beyond 2 years was categorized as miracle territory. Only 10% of kids diagnosed with the #1 genetic killer live to celebrate their second birthday. While we wished for a miracle we prepared ourselves for disappointment as the odds were so heavily stacked against him.
With our dreams being reduced to such short sightedness you can imagine our surprised joy when discussions began about Jadon attending school. Jadon was thriving and we started to dream again. We allowed ourselves to dream about something we had truly given up on.
With that dream came a new worry. We spent his first 3 years worrying the gravest of worries, but this one was new.
Jadon is different from other kids and his differences are somewhat less than subtle. We worried how he would he be viewed by the outside world? Would he make friends? Would he be bullied? Could he possibly be accepted?
All we ever prayed for was acceptance, but we have gotten so much more.
We have been blessed beyond recognition. I truly hope our family is not even recognized as a family with a terminally ill child because he is living life to the fullest.
Jadon has not simply been accepted but truly valued. The kids genuinely love him and that awesomeness brings tears to our eyes.
One day this spring Mrs Green read a book to Jadon’s first grade class about how everyone is good at something. After reading the book the kids did an exercise where they paired up and told their partner something they are good at. Being Jadon’s voice I struggled to come up with something these young minds would understand. Most of the kids spoke of activities such as soccer, baseball, baking, or singing.
I settled on “Jadon is good at making others happy.”
To my surprise this brought the BIGGEST smile to his partners face. With the most incredible enthusiasm she exclaimed “I KNOW! EVERYONE wants to be around Jadon.” Daddy had a little moment right there in class because she made me realize it really is true. Kids fought to be Jadon’s partner all year long. Rarely does someone walk by us in the hall and not say “Hi Jadon” or at least give a silent finger wave. Kids are doing fundraisers in honor of Jadon. They do class projects about SMA. They have not simply accepted him but embraced him for all that he is.
Jadon turned 7 years old today and we have no idea what the future holds. We will continue to take each day as it comes and only allow ourselves to look just so far into the future. What we do know is that our son has been blessed by some amazing people: teachers, administrators, students, classmates, teammates, neighbors and strangers… all of them now friends.
Happy Birthday Jadon! You are truly loved.
For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
Jadon is 6 years old…plus a few weeks.
Jadon turned six on the 25th of June and a funny thing happened this year – we were busy. We were busy LIVING life. We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us. We forewent the big party for a gathering with a few of his close friends. And what fun they had!
This year, we celebrated his birthday by going bowling – a first for Bug. Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant. Phew, partying can sure wear a kid out! The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team. Following the homerun trot his team sang happy birthday to him at home plate. This is definitely a highlight of the whole year.
The pure miracle of Jadon doesn’t come to mind on a day to day basis. It is the milestones where we stop and look around at where we are.
SIX YEARS.
Three times the prognosis of SMA Type 1. The really strange thing is that these days seem to be our best days yet. We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives. So, we’ll say it softly, just once…he’s doing awesome.
Jadon has completed kindergarten and will be entering the 1st grade this fall. He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime. Not to mention all of his friends across the country, ones he has met in person and others on-line. He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics. He is a six year old little boy.
A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City. This was an incredible experience as we got to see many families we already knew and others we had never met. There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven. It is something to see families at all these different stages of the SMA journey.
We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.
On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy. We were yet to have our lives turned upside down. We were yet to understand how strong our hero would have to be. How strong we would have to be. Jadon has been through a lot in six years. There have been some extremely scary days that we thought would be our last but there have been far more beautiful days. Days where his eyes sparkle just a little brighter. Days when the faint giggle on his breathe is a little louder. So many days that we thought we would never have. So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.
This Saturday, Jadon is going fishing with his buddies…..another first.
The Birthday Haul
The 2015 BUG RUN was held on April 11th. We continue to be amazed at the turnout as well as with the overall atmosphere of the event. The BUG RUN has become a gathering of the community and the support is nothing short of overwhelming. From all of our sponsors to all of those who participate, the love for Jadon and the fight against SMA is evident. Acts of kindness abound and one small example is the fact that all of Jadon’s Kindergarten class registered for the run. An anonymous donor paid for those who would not otherwise been able to attend. It is because of gestures like this that we are constantly talking about how blessed we are with those who God has chosen to surround us with.
We are already looking forward to next years run and looking for ways to make it even bigger and better.
SEE YOU NEXT YEAR!!
Jadon- “The BUG”
SMA Mommas and their Warriors – Kaden & The BUG
The National Anthem
I Run In Honor Cards
SMA Warrior & Angels
Patrick Fazio from Action 41 News & Rocket from 93.3 The Mix
IT WAS A VERY VERY GOOD DAY
The gift of mobility is often lost on many. Truth be told, prior to Jadon’s diagnosis it was something we too took for granted. Our eyes have since been opened. With a disease like SMA, watching your child be robbed of this gift is heart-wrenching. Often times we find ourselves yearning and longing for movement. Any movement. No matter how minimal or slight.
We would like to introduce you to Melissa and Allan Kloiber, Mom and Dad to adorable Jacey and founders of Jacey’s Journey. Like so many SMA parents, they wanted Jacey to experience what had been lost. They wanted to see her thrive and be able to reach for the world around her like so many kiddos her age. And so began their quest to make it happen and the invention of the Angel Arm.
Gravity is the worst enemy to a child with extremely low muscle tone. By reducing gravity, movement can often occur when it would not have otherwise. The counterweight of the Angel Arm takes the pull of gravity off the child’s limb enabling them to move. The device is developed to be used in any direction, on any limb. While we could go into the technical aspects of the device, seeing is truly believing.
Simply put, the Angel Arm helps SMA Type 1 kiddos move.
Grace Grutter, mom to sweet Nella, summed it up beautifully when describing Nella’s initial use of the Angel Arm:
“I was in tears yesterday…With the help of Nella’s new angel arm, I was able to see her reach for a toy for the very first time in her life! It was such an amazing moment that I will forever be grateful for. Nella was so determined to grab it, and was SO proud of herself. She was smiling SO big! What a huge blessing to be able to have this moment.”
We have been inspired by the determination the Kloibers have demonstrated in developing this device and building them for other SMA families. Melissa and Allan only charge for materials and shipping, not for the extensive time spent lovingly building or packaging the Angel Arm. Despite only charging for materials, the device may be too expensive for some families. Because of this, they have set up a wish list for families asking for funding of the arm.
Jadon’s Hope Foundation is proud to announce we have issued our first grant to help fund the Angel Arm wish list. JHF wants to see every child who wants an Angel Arm to have an Angel Arm. We are committed and prepared to do more if the need arises. We believe so strongly in what the Kloibers have created that our hope is to do all we can to help get kids moving.
As SMA families it is important that we all continue to support each other through this life storm. Necessity is the mother of invention and where there is a need SMA families find a way. If you would like to directly support the efforts of funding Angel Arms you can do so at the following link. Every dollar donated through this link will go directly to funding Angel Arms for families.
If you are an SMA Family wanting to learn more about the Angel Arm, please click on the following link.
If you would like to apply for financial assistance for an Angel Arm please use this link.
“Life is not about waiting for the storms to pass,
It is about learning to Dance in the Rain.”
“Happy Birthday to you, Happy Birthday to you,
Happy Birthday dear Jadon, Happy Birthday to you.
Jadon turned FIVE YEARS old on June 25, 2014 and we celebrated all week.
Statistics show that only 10% of SMA Type 1 kids live to see their second birthday. Jadon has lived 2 1/2 times his life expectancy. He continues to amaze and inspire us each and every day.
We Love You BUG!
Jadon's Hope Blog 