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.

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

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!

A Difficult Reminder: Why We Fight and Why We Dance.

At every event Jadon’s Hope has hosted, we honor SMA kiddos from across the country.  These kids are the entire reason we do anything and everything we do as a foundation.  We feel it is incredibly important for our supporters to know who they are fighting for.  Simple cards showing bright, smiling faces that highlight very complex lives.  Faces of our courageous Warriors and Angels.

As we get caught up in event planning, inevitably these cards are put off until the last moment and it begins to feel like a task that simply needs completion.  However, the “burden of completing the task” is always overtaken by the honor of the fight.

There always seems to be that moment.  That moment when the work disappears and the shining faces touch our souls.  Suddenly, we understand that we are lucky to know these kids, to understand these kids, and so very lucky to fight for these kids.  We fight to make a better world for those fighting SMA and to one day see a world where SMA does not exist.

That moment often triggers the waterworks.  This year, the sweaty eyes were uncontrollable when one particular card was created.  Brianna has been a smiling warrior for each of our events.  We met Brianna on Facebook shortly after Jadon’s diagnosis and she was always a great source of information and overwhelming inspiration. We were blessed to meet Brianna in person while in Madison WI over two years ago. Living close to Madison, Brianna and her family would often travel there to meet SMA families who traveled to see SMA specialist Dr. Schroth.  When she learned we would be there for Jadon’s trach surgery, she insisted upon coming to the hospital to meet him.  Brianna was a spitfire and seeing her Facebook posts, her smiling face and constant words of encouragement were a gentle reminder of who we should strive to be.

Brianna’s title changed from Warrior to Angel on January 13^th of this year.  She finished her race against SMA here on earth and flew home to be with her creator.  The task of typing Angel beside her name was too much to hold back the emotions.  As SMA parents we know without a cure, that inevitable day will come, but we try not to think about it.  Let me tell you, it doesn’t work.  Brianna lived on this earth for 15 years and showed us all how to live and love.  She reminded us that all it takes is one to make a difference in the lives of so many.  She reminded us that life lessons are NOT always taught by adults.  She showed us how to Dance in the Rain and she will never be forgotten.

We will continue to run in her honor.

Elementary School Spreads SMA Awareness Across the Country and Around the World

The SMA community is constantly trying to spread awareness for a disease that most have never heard of.  SMA is relatively unknown despite being #1 genetic killer of children under two.  We are always looking for unique and creative ways to help get people informed.  When Mrs. Sheldon, the librarian at Rolling Ridge Elementary School (school Jadon attends) came to us with her Flat Stanley idea, we were overwhelmed with her creativity and enthusiasm as well as the potential “reach” of this project.

We feel Mrs. Sheldon explains it best in this short video:

All 450 students at Rolling Ridge Elementary have read a funny book titled, Flat Stanley, written by Jeff Brown.  The book is about a young boy named Stanley Lambchop.  He is accidentally squished “as flat as a pancake” when a bulletin board falls on him.  Stanley is fine, except for the fact he is very flat.  Stanley discovers some advantages to being flat.  He can slide under doors, go into sidewalk grates, and even fold himself up small enough to fit into an envelope.  When Stanley wanted to visit friends in California, his parents folded him up and placed him in the mail.

All the students made their own Flat Stanley and they have been sent near and far.  Accompanying each Flat Stanley is an SMA warrior or angel.  Over 100 SMA kiddos are represented!

The project is simple, when someone receives a packet we simply ask that they take their Flat Stanley and SMA Warrior/Angel on some adventures. Take them to fun, exciting places, hang out with you at the movies or just have them at Christmas dinner but make sure to take pictures and send the pictures back so we can see where they have been.  We hope to have pictures from all over the world.  Pictures can be emailed to:  flatsrr@olatheschools.org

Here is another blog telling what we want you to know about SMA: SMA Awareness – What We Want You to Know

Many Flat Stanleys and SMA Warriors/Angels have already been out doing some pretty awesome things.  Check out these adventures!

 

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

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.