2018 Swing Giveaway 20+10=30

 

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.

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.

a

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!

Stupid Elf Made Me Cry

Stupid Elf Made Me Cry

We always try and do as much as we can to find fun things Jadon can do.  We  “Dance in the Rain” of this life storm called SMA as much as possible.  This year was our first year for a Christmas tradition of “Elf on a Shelf.”

For those who are not familiar, the elf arrives and you must give it a name which in turn gives the elf its magic.  The elf’s job is to observe the kids, fly to the North Pole each night and report their behavior to Santa.  The elf comes back from his northern excursion and typically gets into some sort of mischief during the night.  Each morning he will be in a different place within the house and the kids have to wake up and find him.

After going through several names, Jadon decided he wanted to name our elf Eddie and he got so excited every time we set out each morning to find him.

On Christmas Eve all the elves all return to the North Pole with Santa, so the day before Jadon decided we needed to make something special for Eddie to play with on his last night here.  We settled on a hang glider.

Jadon was VERY excited to see him hanging from the ceiling fan the next morning, he kept checking on him throughout the day.  At bed time we hung Eddie and the glider on Jadon’s bed (we were careful not to touch him.  If you touch the elf they lose their magic.)

Christmas day I excitedly pointed out to Jadon that Eddie had gone but he left a note.  Eddie said that Jadon was such a good boy but Jadon was visibly upset. I could tell he wanted to see Eddie not a note from him.

I began to explain that Eddie was in a much better place.  The North Pole is great for Eddie because he can fly around all day (instead of just at night), play with his friends and just simply hang out with Santa.  I told Jadon he would see him again next year which of course to a 4 year old is like a lifetime.

Somewhere in the midst of my little speech I realized what I was saying to my terminally ill child.  I realized I was using the words I dread to hear.  The words that will likely be used to comfort our family when THAT dreaded day arrives.  I believe that when Jadon is called home by the Almighty he will truly be in a better place, he will be free from SMA, he will get to celebrate each day with God, and one day we will all be reunited in heaven.

I quickly realized that while I believe these words to be true in relation to real life (not a little elf and Santa) they will likely do little to comfort the pain of loss when that horrible day comes.

My mind quickly shifted to all the families who have already lost their angels.  Those families waking up on Christmas morning wishing they had just one more Christmas with their precious child.  With tears in my eyes and Jadon looking at me like I was insane, we said a prayer for those families.  We prayed for their comfort and understanding.  We prayed that they would find laughter in the day while still remembering and missing their angels.

Jadon seemed to get it.  He seriously seemed to understand as I wiped the tears away and proceeded to get him out of bed and ready for his treatments.  I talked to him about how we would have the best Christmas day ever, how we would do so to honor all those angels.  We have no control over tomorrow but we can choose to enjoy each day.

Jadon had the best day.  His oxygen saturation was 100% the entire day, his eyes sparkled, and was “singing” all day.  I think he was singing for the angels.

90% of kids with SMA Type 1 don’t live to celebrate their 2^nd birthday on earth.  Jadon was exactly 54 months old (4 1/2 years) on Christmas day.  Every day he beats the odds those odds worsen.  We don’t care what the statistics say because Jadon is with us now and WE WILL DANCE.

Eddie messing with the Toy Story crew

Looks like they caught him the next night.

Making friends…all is good

Never pick a snowball fight with a snowman.

Hoping everyone had an incredible Christmas.

Dear Jadon, You are FOUR Years Old Today

2009

2013

Jadon,

Today you are FOUR YEARS OLD.  At times it is truly hard to comprehend.  Some days we wonder where the 4 years have gone and other times we look into your eyes and you seem infinitely older than just 4 years.  We have truly taken one day at a time and ended up right here…4 years later.

Like it was yesterday, we remember the day you were born.  We remember the pride we felt, the dreams we had for you, and the love that consumed us in your presence.  Although our dreams for you have changed direction, our love and pride for you has grown more than we could have ever imagined.

Jadon, you have changed our lives for the better.   You are our light and inspiration.  You have taught us things we would have never learned any other way.  You have led us places we never would have traveled.  You have led us to people (amazingly good people) that we never would have met.  You have taught us perspective, all those things that seemed “important” before you were born are distant to what truly matters the most.  You have taught us the meaning of unconditional love and hope.  Through you we have learned that life is more than what our earthly eyes see.  You have changed us in ways we never would have changed.  We thank God for you and these changes each day.

Our love will never change.  We want you to know that our love for you is eternal and you should never worry.

Don’t worry Jadon that you can’t speak the words “I love you” as we so long to hear…we can see it in your eyes

Don’t worry Jadon that your smile has gone…we can still see that little twitch in the corner of your mouth and that sparkle in your eye.

Don’t worry Jadon that you can’t speak the words “GET my crazy sister off of me before she tears my eyes out and rips off my ear”…we can see it in your scrunched up eyebrows.

Bug, we have done A LOT of coughs, a ton of suctioning, a whole lot of thumping, quite a bit of stretching and much more worrying than any family should – we have also felt and experienced more love than some families feel.  Your gentle attitude and desire to see tomorrow has calmed us and inspired us.

While, The SMA Standard of Care booklet doesn’t ACTUALLY state that we MUST tell you we love you 97 times per day or that we MUST give you 214 kisses per day…. IT REALLY SHOULD.  And here’s the deal … that is not going to change.

Happy Birthday fella, we love you so incredibly much,

Mommy, Daddy, and Sissy

Fun with Chicken

Wednesday night the Chick-fil-A in Olathe hosted a small fundraiser for Rolling Ridge Elementary benefiting Jadon’s Hope Foundation.  Well… small is what we thought it might be.  We are quickly learning that with these amazing new friends from Rolling Ridge – nothing is small!

Because of cold and flu season we are still not taking The BUG out of doors.  However, his amazing teacher took a laptop and we Skyped in (that’s Ms. Lentz holding Jadon in the pictures below.)  Jadon could see and hear the events at the restaurant and watch the contestants compete in the chicken eating contest and frozen t-shirt contest.  Skyping also meant that everyone could come over and say hi to Jadon.  Needless to say he was incredibly excited and soaking up the moment!

That’s The BUG on the computer screen, right in the middle of the action

When someone would come up and say “Hi”, Jadon became through the roof excited and began vocalizing louder than we have heard since his trach surgery in July.  For the past month, Jadon hasn’t made any sound and only recently started vocalizing again.  Parents, I know it may sound inviting to have your child be silent, but trust me, complete, not a sound silent is no fun at all.  When his classmates would come on the screen, Jadon would get really loud and he had a great time cheering on the contestant participants.  Mad props go out to Rashaud Johnson for winning the nugget eating contest and to Michelle Williams for winning the frozen t-shirt contest.

It was very emotional to see such a large turnout.  Kristin said she got  misty eyed walking in seeing how many cars were in the parking lot and going through the drive-through and seeing the number of people in the restaurant.  She said every table was occupied and people were even standing up- overwhelming for sure!!  And to see all the kids there – wow!  There is nothing better than kids helping kids.

We won’t know the total donation from the night for a couple more days but there was $150 in the donation bucket alone.  One of the cashiers said it was a very good night.  We will have to wait and see, but I think it is safe to say that SMA awareness was spread and money was raised to increase the fight.  Thank you, thank you , thank you.

Reluctance to Dream

If the blessing of SMA is “Living for Today”, the curse (one of many) may be the “Reluctance to Dream.”

When SMA accosted our lives over 3 years ago we knew we could never return to the world of “It won’t happen to us”.  As we wait patiently for the arrival of our daughter we know it is only by the grace of God that we stand here today.  It is through God’s grace that we are having another child and His grace is allowing Jadon to meet his sister.  This is something we do not take for granted.   In fact, I  made this shirt two years ago in case we were ever blessed with another child and Jadon wasn’t here to place his hands on momma’s belly.

Jadon is not only here but he is thriving and he is very excited to meet his little sister.  Kristin has been recording BGB’s (that’s Baby Girl Burks) heartbeat at her weekly doctor visits.  Jadon is simply mesmerized when she plays the recording for him.  We play it at least 5 times or he gets very grumpy.

We have already had testing done and BGB is SMA free.

But like I said, we were evicted from that blissful world of “It won’t happen to us.”  She doesn’t have SMA but there are a thousand and seventeen other things that could be wrong with her.  How do you define “wrong?”  By definition there is a lot “wrong” with Jadon but he is perfect to us.  He is exactly who he was meant to be.  He is our son.

We really aren’t in a state of “worry”, just simply that crazy “Reluctance to Dream.”  We want to dream of her future and we want to plan all the great things she will do.  Those things would be OUR dreams and OUR plans, not hers and likely not God’s.

So we will try and finish her room before she arrives and we will pray for her every night.  We pray with Jadon that she will be healthy, happy, smart, beautiful, and funny.  She better be funny, healthy first, but then funny.

We will welcome her into our lives in less than 7 days (WOW!!) and she will be loved unconditionally.  She will have the best big brother to learn from and two parents who fully understand what a blessing she is.

Oliver the Owl

The BUG had a special visitor arrive on Wednesday

This is Oliver the Owl.

Mr. Oliver travels the world hoping to educate and raise awareness about SMA.  He also brings a heaping helping of smiles everywhere he goes.  The night he arrived we just sat around the ventilator and listened to tales of amazing adventure and travel.  Oliver sure can tell a story.  He was telling us about all the cool places he had been when he recognized some of the kiddos in Jadon’s pictures.  He said, “I know those beautiful girls”, pointing to Miss Gwendolyn and Miss Getty, “I got to visit with each of them.”  While The BUG wouldn’t admit it I could tell he was totally jealous.

The next day playing hide-and-go-seek Oliver took right to the tree (well, he is an owl).

Olive actually went to school with us on Thursday.  The office said it was the first time they had given a visitor pass to an OWL.  
This is a short video of Oliver’s introduction to the class.

School can be a lot of “WORK”

At the Play-Doh center we made a little Oliver the Owl

We have also discovered that Oliver really enjoys Jadon’s therapies.  Definitely more than Jadon does.  One of The BUG’s therapies (we call it the THUMPER) vibrates the Gunkers in his lungs loose so we can get them out.  Oliver obviously thinks its pretty fun, but as you can see in the video  The BUG is much more interested in Shrek on the DVD player.  Of course this IS about his 30th ride.

Oliver is with us until Tuesday night and then he travels on.  The BUG is sure enjoying his company and I am sure we are going to have a great time these next few days.

Oliver loves to visit SMA kids so if you are one or you know one be sure to ask him to come see you.

Be sure to check out Oliver’s page on Facebook and “like” it He almost has 800 fans:

http://www.facebook.com/oliversfriends?fref=ts

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”.

What we want you to know about SMA

A friend of mine recently said to me “I know you want to build awareness for SMA, but what is it that you want people to know?”  I thought this was a VERY good question with a not so short answer, but here it is:

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 – 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. (Be sure to check out our Facebook page this month to see all the amazing kids “Dancing in the Rain”.  There are so many beating the statistics. )

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.)

Fourth – There is a lot of very promising research.

-There is so much that is scientifically known about SMA that we truly believe there will be a cure!!
-Gene Therapy is the most promising research right now and should be in human clinical trial in the first half of 2013.  This is very, very, exciting!!!!

 Fifth – Newborn Screening

– Newborns are tested for several diseases but SMA is not one of them.  It should be included.  It would be beneficial to know an SMA diagnosis as early as possible.  Once a cure is discovered this becomes even more critical.

So there it is (the “short” version).  Now go shout it from the mountain tops!