For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
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!
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.
Jadon is 6 years old…plus a few weeks.
Jadon turned six on the 25th of June and a funny thing happened this year – we were busy. We were busy LIVING life. We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us. We forewent the big party for a gathering with a few of his close friends. And what fun they had!
This year, we celebrated his birthday by going bowling – a first for Bug. Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant. Phew, partying can sure wear a kid out! The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team. Following the homerun trot his team sang happy birthday to him at home plate. This is definitely a highlight of the whole year.
The pure miracle of Jadon doesn’t come to mind on a day to day basis. It is the milestones where we stop and look around at where we are.
Three times the prognosis of SMA Type 1. The really strange thing is that these days seem to be our best days yet. We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives. So, we’ll say it softly, just once…he’s doing awesome.
Jadon has completed kindergarten and will be entering the 1st grade this fall. He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime. Not to mention all of his friends across the country, ones he has met in person and others on-line. He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics. He is a six year old little boy.
A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City. This was an incredible experience as we got to see many families we already knew and others we had never met. There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven. It is something to see families at all these different stages of the SMA journey.
We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.
On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy. We were yet to have our lives turned upside down. We were yet to understand how strong our hero would have to be. How strong we would have to be. Jadon has been through a lot in six years. There have been some extremely scary days that we thought would be our last but there have been far more beautiful days. Days where his eyes sparkle just a little brighter. Days when the faint giggle on his breathe is a little louder. So many days that we thought we would never have. So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.
This Saturday, Jadon is going fishing with his buddies…..another first.
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!
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.
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!!