Pictures from The BUG RUN 2016

For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE

 

Jadon is SIX + a few weeks

Jadon is 6 years old…plus a few weeks.

Jadon turned six on the 25^th 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 1^st 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

When Your Legs Get Tired, Run With Your Heart

 Amy Vrban & Kristin Burks

WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN

I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.

SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!

Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.

I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!

Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.

Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!

Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!

We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!

Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!

In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!

Old Settlers Parade

The Johnson County Old Settlers Parade is the largest parade in the state of Kansas. It has an average of 160 entries, including 16 area High School and Middle School bands, numerous club and organization entries and several commercial floats. The parade is attended by between 65,000 and 75,000 people.  Jadon’s Hope Foundation entered a float themed “Dancing in the Rain”.

The day was a perfect sunny 70 degrees.  JHF supporters walked with the float while SMA warriors Jadon, Arturo, and Amira road along.  3,000 SMA fact cards and over 100 t-shirts were handed out to the crowd.  It was a perfect day.

A big giant THANK YOU to all the walkers and riders who helped spread SMA awareness.

SMA Awareness – What We Want You to Know

 

We are often asked what we want people to be aware of in regards to SMA.  This blog could be 20 times longer but it encompasses the basics we would like everyone to know.  It’s not that a person needs to be an expert but if  the need arises having read this information may make a difference.

First – We want people to know the disease exists.  SMA = Spinal Muscular Atrophy.

– Most people have never heard of Spinal Muscular Atrophy, including medical professionals (We certainly had not).  We want everyone to have heard of the disease.  When I say “Spinal Muscular Atrophy” I want people to say “I’ve heard of that” rather than “Gesundheit” because they think I just sneezed.

To get people’s attention we must tell them how severe the disease is
– #1 Genetic killer of kids under 2
– 90% of the kids diagnosed with SMA Type 1 don’t live to see their second birthday

Second – Symptoms and Diagnosis

There are 4 main types of SMA with Type 1 being the most severe.  As a general rule the type is dictated by age of onset and furthest milestone reached. The other 3 types would have similar symptoms but less severe.

These are symptoms for a type1 (Usually diagnosed between 0-6 mnths of age):
– Muscle weakness, limpness in the arms and legs. “floppy baby”
– Most type 1s will never sit on their own and won’t be able to hold their head up
– A weak cry, cough, and swallow
– Their belly will be very active during breathing
– The chest will be narrow and the belly rounded giving the torso a pear shape
– Most will develop a frog-leg position when lying flat on their back
– The tongue often twitches

These are several symptoms but the child may have all or only a few of these. 

Third – You can be tested to see if you are a carrier of the disease. 

-1 in 40 people carry the gene that causes SMA.
– If you are considering having children it is advisable to be tested.  Knowledge is power.
– If anyone in your family is a carrier of SMA (even second or third cousins) your chances of being a carrier increase.  If you have a first cousin that is a carrier, your odds increase to 1 in 8. (I am a carrier so I hope my cousins are paying attention.)

Two carriers having a child present a 25% chance of the child being affected by SMA.

Fourth – HOPE ENDURES

-Newly diagnosed families NEED to know that there are options of care that can extend the child’s life.  Despite the staggering statistics there are care options that can (not always) extend the life of even the most severe cases.  This care relies on the help from many machines and a specialized diet.  These options may not be right for every family but every family needs to know they exist.  Doctors definitely need to know these options exist and offer these options to newly diagnosed families, not just tell them there is nothing that can be done; just take your child home and love them.

Fifth – There is a lot of very promising research.

-There is so much scientifically known about SMA that we truly believe there will be a cure!!  Many pre-clinical research is currently active, five of which are now in clinical trials.
-Gene Therapy is the most promising research right now and it entered human clinical trial earlier this year (2014).  This is very, very, exciting!!!!

–Isis just announced that it will begin a pivotal Phase 3 study evaluating ISIS-SMNRx.

Sixth – Newborn Screening

– All newborns are tested for several diseases but SMA is not one of them.  It should be included and there are many people diligently working to make this possible.  It would be beneficial to know an SMA diagnosis as early as possible.  Once a cure is discovered this becomes even more critical.

This is the very basics of SMA Awareness.

Check out our Facebook page the entire month of August as we provide more insights into the SMA world and please, if you have questions, don’t hesitate to ask: www.facebook.com/JadonsHopeFoundation

Jadon’s Hope Foundation Partners with Jacey’s Journey to Fund Angel Arms

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.

 

 

 

5 Years Old and Counting

Jadon “The BUG” Burks
June 25th, 2009

Where do you see yourself in five years?

A common interview question many companies have used for a long time.

If we would have been asked this question five years ago on this day, the day Jadon was born, our answer would have been wrong.  Surely we would have forecasted higher salaries, a new house, nice cars, and oh yeah, Jadon being all boy running around like crazy and starting Kindergarten in the fall.

Had we been asked this question just two short months later, our answer would have been drastically different and thankfully, that too would have been wrong.  We would have forecasted that on this day we would be visiting Jadon’s gravesite.  Probably releasing balloons, honoring our son, crying a lot and wondering why our precious little boy had to leave us so soon.  At two months we were also prepared for the worst financially as well…but we didn’t care about that.

We are not even sure exactly where our reality falls within these two forecasts…and truthfully it doesn’t even matter.

Shortly after we were told that Jadon would be lucky to live past his first birthday we met our “face of hope.”  Hope can come from anywhere or anyone.  For us it was the face of a 5 year old boy who also has SMA Type 1.  Charlie Sykora and his family were the first members of our new SMA family that we met.  Every child is different, Charlie’s mom Kim told us several times and we soon came to realize this statement and understand how much stronger Charlie was than Jadon.  However, we were told only 50% of kids live to be one and only 10% live to be two.  Here was Charlie – happy, healthy, and an optimistic future of a five year old.  Suddenly we had hope.  We began to look beyond the statistics and what the doctors initially told us.  We armed ourselves for the battle ahead – to give Jadon the best quality of life we could.  To help him live and help him thrive. As the months went on, we were introduced to even more amazing kiddos like Charlie who were drastically beating the odds.  Kids like Veronica, Lizzy, Madison, Danielle, Aubrey, Kaige, Cashel, Allie, and MJ (who is now 26 years old).

The road has been anything but easy, but it has been rewarding.  So many things we gave up on have actually come to pass.  Jadon has:

Hung out with Charlie, and Emma (Charlie’s sister) Jadon’s 2nd Birthday (Huge Milestone)

Become a BIG BROTHER

Gone to school

Been on a baseball team

Gone to Disney

We have been inspired by so many and now we suddenly find ourselves looking at our five year old son truly understanding that Hope Endures.  We wonder whose inspiration Jadon is.  If a family has a weak type 1 and they need an example to follow, our little hero has conquered some huge obstacles.  Don’t get us wrong, there have been many very dark scary days where it seemed impossible we would see tomorrow.  But Hope Endured and tomorrow came.  Then another tomorrow, and then another, then another, until we now find ourselves celebrating his 1,826^th day of changing our lives for the good.

SMA BUDDIES

To put this into perspective, Jadon and his friends who have surpassed the 5 year mark have done something most of us don’t have a chance of doing.  At 5 years old they have lived 2.5 times longer than their life expectancy.  If the average life expectancy in America is 80 years, we would all have to live to 200 years old to do what these amazing kids are doing.

Happy 5^th Birthday Jadon!!!  We love you so incredibly much and are immensely proud of you.  You are our light, our inspiration and our hope.

The BUG RUN – 2014

On April 5^th 2014 nearly 600 people gathered on a frigid day in Olathe to take a stand against Spinal Muscular Atrophy (SMA).  Planning of The Second Annual BUG RUN began exactly 363 days earlier.  The groups of volunteers that have worked on the BUG RUN for the last year have been nothing short of amazing.  We would not be able to fit an adequate number of Thank Yous in this blog.  We are completely blown away on a regular basis by those around us and their dedication to the fight against SMA.

The BUG RUN race director Amy Vrban does an amazing job getting (and keeping) everything in order.  She has a spectacular group of people who each do their part perfectly.  Big giant thank yous to Cathy, Jennifer, Melissa, Melissa, Katie, Andrea, John, Lori, Jennifer, Suzie, Michelle, Joanne, Leslie, Allison, and Julie.  Beyond this core we had close to 150 volunteers the day of the race as well as so many people simply spreading the word.  THANK YOU.

We couldn’t hold the event if it wasn’t for our amazing sponsors, many of whom were sponsors for the second year in a row.  Thank You so much.

The goal was to make this year better, and hopefully bigger.  Both goals were substantially surpassed.  Our emcee, Patrick Fazio of 41 Action News and Kristin kept the crowd engaged with commentary and SMA trivia leading up to the start of the race.

Kristin Burks, Patrick Fazio, and Amy Vrban

The big surprise for Kristin and I came when Olathe Mayor Mike Copeland presented a proclamation that the day would be known as Jadon’s Hope Day.  I could barely keep my emotions off my cheek when I thought of the city recognizing the disease as well as the foundation.  You can’t cry in front of the Mayor!

Mayor Mike Copeland presenting a proclamation.

Michelle Boucher singing the National Anthem.

The National Anthem was amazing.

 

61 balloons for 61 angels.

61 balloons were released in honor of the 61 angels that gained their wings in the year since the last BUG RUN.  This portion of the day was extremely emotional for us as we thought of those 61 families who go to bed at night wishing they had just one more day with their little ones.  These are kiddos whose stories we have followed, some we have met personally, but all have touched our hearts.  There are so many others who don’t even know about because they don’t make a connection and possibly don’t have the support they desire.  We want every family who wants help to get it.  We want every family who has lost a child to know they WILL NOT be forgotten.

 

“I RUN IN HONOR OF” stickers.

This year runners had the option of running for an SMA child.  They simply chose a sticker from 60 SMA warriors/angels.  The runners dedicated their run to these kiddos from across the country.  One of the SMA kids who was being run for received the medal his runner won at the race.  How amazing is that?

Custom shirts, bibs, and medals

 

Top 3 runners!

Bill Allen
1st Place

Ricardo Medellin 2nd Place

Hadley Cornish
3rd Place

CLICK HERE FOR COMPLETE LIST OF RESULTS

 

The Bitty BUG RUN

Kids under 5 run in the Bitty BUG RUN.  Do you know who won?
WE ALL DID…because their all so darn cute!
Kids helping kids will pull at our heart strings every single time.

 

It was truly an amazing day and we are blessed to live in a community that is willing to stand beside us, put on a cape and fight this horrible disease.  SMA is hard, very hard, but to feel the love that surrounds us makes the fight seem a little easier.  It is that feeling that we want to pass on to other SMA families, that feeling of inclusion.  That inclusion may be what some families need just to fight one more day, and then another, and then another.

We will see you you next year for ANOTHER BUG RUN!!!!!!
Mark your calendar- APRIL 4th 2015

 

 

 

Three strong SMA Mommas.

Pictures courtesy of Jeff Lentz.  Thank you Jeff!

 

D-DAY (Diagnosis Day #3)

August 25^th 2009, is our D-DAY.  The doctors didn’t tell us what our life with SMA would look like today, 3 years later.  What they told us was that 3 years from that day when we spoke of Jadon’s life, we would be speaking of a life that WAS, not a life that can be.  They told us we most likely had less than a year with him and definitely no more than 2.

I don’t blame the doctors for the weather they were forecasting.  The statistics they referred to are unfortunately very true:

-SMA is the number one killer of children under 2
-50% of SMA type1 kids will not see their 1^st birthday
-90% of SMA type 1 kids will not see their 2^nd birthday

It’s not so much about WHAT they did or didn’t know as it is WHO they didn’t know.

They didn’t know all the SMA families we now know.  We have focused our Facebook page ( Jadon’s Hope Foundation) this month on these people choosing to make life the most it can be despite the storm of SMA in their lives. “Life is not about waiting for the Storms to pass, it is about learning to Dance In the Rain.”  These kids and these families have inspired us to new heights

 We know it’s by God’s grace that we are still allowed to look upon Jadon’s face and we feel incredibly blessed to do so.  At the same time we mourn for those short lives that make these statistics true.  Life is way too short and while this journey is rough I am glad our course has been altered.  I am confident that we will not be returning to our formerly scheduled path.  I am confident that we have been forever changed.  For that I am thankful, but SMA still sucks.  We have learned a new appreciation for life.  I would rather have less and appreciate it, than have it all and still be looking for more.

SMA is one nasty storm but we are determined to dance in it’s rain.  The funny thing is, before D-DAY our life had storms but we usually failed to dance.  Now we make the time for life, we appreciate the time, and we enjoy every single second we can. Every life has storms and none of us are guaranteed tomorrow.

What will you do today to “Dance in the Rain”?

This video is set to the song “What Faith Can Do” by Kutless.  This became “BUG’s song” after a friend did a slideshow for us shortly after his G-tube surgery.  Now, everything stops when it comes on the radio and we sing with BUG.  The video shows his last two “unexpected” birthdays and his most recent surgery.  With a tracheostomy there is always a chance the patient will lose the ability to make sound.  We prayed for sound, any sound…it’s amazing “What Faith Can Do”.

Big Decisions…

When Jadon was first diagnosed with SMA, having trach surgery was not part of our care plan for him.  Looking back, we know that initial reaction was based on fear.  Fear of the unknown.  Fear of having a tube sticking out of his throat.  Fear of not understanding what a trach meant. Just plain FEAR.

As you know, over the past several months Jadon has been having severe respiratory distress episodes causing his heart-rate and oxygen levels to plummet to the point where we are wondering if “this will be the last time.”  A feeling no parent should be faced with.  Not to mention, these episodes are very stressful on Jadon’s little body – something we don’t want to put him through. After much research, speaking with other amazing SMA families and a lot of prayer, we have decided to schedule a tracheostomy surgery for Jadon the last week of July in Madison.  This is a big decision – one we haven’t taken lightly and haven’t come to quickly.  This is what is best for Jadon at this time.  We firmly believe that each parent must make their decisions based on their child and their family.  And this is exactly what we have done.

So what does the rest of our summer look like?

Well, we leave for Minneapolis on Wednesday (June 20^th) for the Families of SMA Conference.  We are extremely excited to meet and connect with so many other SMA families.  They are anticipating over 1,100 attendees from 21 countries – WOW!

On Monday the 25^th our big boy turns three years old.  (How cool is that?)  We will return to Kansas City with a three year old on the 26^th.

Jadon’s surgery is scheduled for the week of July 30^th.  We will be inMadison for at least two weeks (who wants to watch some beagles? :)).

Jadon is scheduled to start pre-school on August 16^th.  Phew…. where did the summer go?

While I don’t consider this blog “bad news,” other than the fact that the disease is progressing, we are holding on to some really GOOD news.

You will have to check back tomorrow for the REALLY GOOD news.  I can barely stand it.