The 6th Annual BUG RUN

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 6^th 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 7^TH ANNUAL BUG RUN!

 

7 YEARS OLD

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.

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

 

2 More Sleeps Until The BUG RUN

We have been following Katie Horner’s Mission over the past several months ( Woman on a Mission) and it is all about to come to a conclusion.  It has been an emotional journey to see her work so hard and reach her goals while constantly thinking of others. Her objectives are just two days from being completed.

COMPLETE –  Raise enough money for all the students at Rolling Ridge to run The BUG RUN.

COMPLETE – Run The Boston Marathon.

REMAINING – RunThe BUG RUN and show ALL 485 students at Rolling Ridge what it means to run for a cause…”RUN to end SMA.”

This is an update from Katie today:

“2 more sleeps” as my son Hunter, who is the same age as Jadon and share the birthday month of June together, would say until the 4th Annual Jadon’s Hope Bug Run!

Today, like many days, was another day at Rolling Ridge where excitement filled the air! Our students received their race shirts and bibs. On top of that excitement, we decided to have an all school picture. So, with about 480 kids plus numerous staff members, we all went out to the playground first thing this morning to smile in the sun as a community! A community that shows compassion, spreads awareness of SMA, stands together, works together towards many common goals, and supports one another! We are truly blessed and could not have done that without the support from this campaign and the support of the entire staff at Rolling Ridge pulling together to make this happen.

I leave you with some quotes that were heard from our students at various times today. Some of which I heard and others that were passed on to me.

“Hold up, we get our OWN number?!?!”

“My number is 246 or maybe it was 146, I don’t know, but either way I have a number!”

“You have the same shirt on that I do…(long pause), wait we all have the same shirt!”

“Mrs. Horner, I am running for Charlie, who are you running for? Are you running for a Warrior or an Angel? I hope they find a cure so there are no more angels.”

Together, WE RUN TO END SMA!

The Fabulous Miss G, Forever In Our Hearts

Whenever we suffer a loss in our SMA family, it is hard.  And each one has its own affect on us.  We reside in a world that we wish with every fiber of our being didn’t exist.  A world where little ones become angels far too soon and parents have to say good-bye to their precious babies.  But this one, this one just crushed us.  Gwendolyn is very special to us as are Bill, Victoria and little sis, Eleanora.  Over the years and despite the many miles that separate us, an amazing bond, connection, friendship has grown.  We have celebrated with each other, worried and cried with each other, laughed with each other, lifted each other up, helped each other out and leaned on each other.  We have just been there for each other.

And Jadon and Gwendolyn?  Well, they were boyfriend and girlfriend.  Whenever Bug saw a picture of Miss G his eyes would get as big as saucers, he would purse his little lips and get major “happy belly.”  And when Miss G saw Jadon, she would bat those gorgeous long lashes and tap, tap, tap her finger.  He was her blue-eyed boyfriend and she was his fabulous Miss G.  Everywhere you look in Jadon’s bedroom, there is something from Gwendolyn.  Multiple pics that adorn his shelves.  The turtle she gave him years ago that to this day he insists is turned on at night.  The blanket that he loves to have his feet snuggled up in.  Valentine’s Day cards she made him.  Treasures she picked out for him during trips to Disney.  Pout-Pout Fish books.  Tickle Monster book.  She is there.

Whenever we would go out on adventures and Jadon got a souvenir, he insisted that Miss G would get one too.  Always something blue for him.  Purple for her.  Early in their “courtship”, Jadon found out that a little boy had given Miss G a flower while at a playground.  That simply wouldn’t do and he made sure Miss G had an even bigger purple flower from him.

To profess his love for Miss G, Jadon even got a little ink.

And it worked!

Earlier this year, I was blessed to be able to spend some time with Bill, Victoria, Gwendolyn and Eleanora when I traveled out to California for business.  It was magical – a moment when you hoped time would just stand still.  And as the sun began to set and night fell, I didn’t want the evening to end.  I wanted to soak up every second because I didn’t know the next time we would see each other again.  When we finally had to say our good-byes, I raced to my room to call Tony.  I told him we HAD to figure out a way for all of us to get together.  For Jadon and Gwendolyn to meet.  Unfortunately, that never happened.  Just one more thing SMA has robbed from our kiddos.

When Bill called early Saturday morning, our hearts shattered into a million pieces.  The wind knocked out of us.  How could this be possible?  My knees buckled as I crumbled into a heap onto the floor.  This is NOT supposed to be happening.  It simply wasn’t fair.

Ever since Jadon was little, he would randomly look into the corners of the room and jabber/chat.  We firmly believe he is talking to his angels watching over him.  Throughout the rest of the day on Saturday, we struggled with how to tell Jadon about his fabulous Miss G.  We desperately fought off tears anytime we were face-to-face with him.  As we got him settled in his room to begin nighttime treatments, we finally mustered up enough courage.  We told him we had some very sad news to share.  He looked at us very seriously and with his eyes said “Yes.”  We said, it’s about Miss G.  Again “Yes.”  We asked him, do you already know?  This time BIG, BIG “Yes.”  We asked, have you been talking to Miss G?  Another BIG, BIG “Yes.”  He had been chatting earlier in his room during his chill-time.  We should have known he already had a very special visitor come by to let him know she was okay and would be watching over him.  Even now these two have an incredible bond that will always be there.  We take some comfort knowing that the fabulous Miss G is continuing to watch over him and be with him.  

The world was a better place with Gwendolyn Strong in it.

The world is a better place because she lived.

We are better because of Gwendolyn’s life and we will always carry a part of Miss G  with us.

We will Never Give Up.

We are… G-STRONG.

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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

BUG RUN 2015 pics

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

 

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.

D-Day #5

2009

Today marks 5 years since we received the most devastating news parents could receive.  This is D-Day or Diagnosis Day.  The day all the hopes and dreams we had for Jadon were shattered.  In 2010 and 2011, this day was marked with a lot of sorrow and mourning.  Mourning the loss of what was meant to be.

But as the years have progressed, we don’t fear today as much as we did.  Don’t get us wrong, there is still pain and will always be mourning, but as Jadon has continued to overcome insurmountable obstacles we focus on the good.

We focus on what he has accomplished.

We focus on the immense love and joy he has brought to our family.

We focus on the impact he has on so many.

We focus on dancing in the rain.

Over the years, we have learned that the purpose God has for Jadon far exceeds what we had shaped in our minds 5 years ago.  We will continue to trust and follow with Jadon leading the way.  We will continue to have faith and know that love and hope truly does endure all.

Today also marks an even bigger reason for attention –Jadon is officially 5 years and 2 months old.  Amazing! Keep fighting sweet boy.  We love you so much Bug and are so incredibly proud of you!!

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