NavigatingLifeWithLMS

Lateral Meningocele Syndrome (LMS) is a term most people have never heard, and many more never will. For our family, LMS is a reality, and unfortunately so is Acute Lymphoblastic Leukemia (ALL). Our daughter, Kailanie, is battling both LMS and ALL. She needs all support she can get, that is just a small portion of the purpose of Kailanie’s Crowd.

What is Kailanie’s Crowd?

Not only are we seeking support and awareness for our daughter, but for others with LMS as well. As far as we can tell, there are less than 50 people diagnosed with LMS, world wide. It is possible there are more people undiagnosed due to milder symptoms.

What about ALL, and every other childhood cancer? This topic needs more attention too. Did you know childhood cancer receives less than 4% of cancer research funding? Yeah, neither did we, until our daughter was diagnosed with cancer.

So, here we are, hoping to drop some knowledge and spread awareness about LMS, and ALL. It is hard to find accurate and updated information on LMS, due to the rarity of it. The combination of cancer and LMS is entirely uncharted territory, and we hope to change that.

Sharing peace, love, and happiness is just as important to us as support, knowledge, and awareness. We aim to combine it into a nice little package. This world could definitely benefit from more positivity.

Simple ways we are spreading awareness

Our family, more importantly, our daughter, has been dealt some fairly iffy cards. We plan to help her play out her hand to it’s fullest potential by reaching out to the world. I guess you could call it our version of “Go Fish?”

We have put our story of LMS on social media in hopes to find other families, and we luckily have. We also hope to encourage others to dig deeper for answers and possibly get a diagnosis. Inspiring others to keep going, become a better person, do more for others, and the list keeps going. The outcome so far has been nothing but love and support, from total strangers even…you all rock!

Another step we have taken towards awareness has been opening a shop of Kailanie’s Crowd items. These items are to show Kailanie, her family (us), and the rest of the world you are supporting something special. Who knows, maybe purchased products will spark a fire in others.

How we hope to help spread peace, love, and happiness

It is becoming more and more alarmingly evident that the human race is destroying our planet. We have a plan to do a little something about it.

As the weather is much nicer these days, we are back to our usual family outings to “the sticks” as we call it. It makes us sick how much trash is left behind, and by people claiming to be “enjoying” the outdoors. I am not sure if they care how difficult their left behind trash makes it for the rest of us to enjoy it…and let’s not forget how hard it is for the wildlife to live with all that crap.

Since our family is beyond done with our favorite spots being overrun by trash, glass, cans, bottle caps, and so on we intend to do something about it, and you can too! By participating in Kailanie’s Crowd Cleaned Campsite’s, you can help us send a message to those destroying our planet.

The idea is to leave any filthy campsite you come across clean. That means stepping up and fixing someone else’s carelessness, which can act as a great example and learning experience for kids! It always gives a great lesson in gratitude, in many ways.

How to participate in Kailanie’s Crowd Cleaned Campsite

Our idea is to clean all the junk left behind at campsites we come across on our adventures. In place of that junk, we will leave Kailanie’s Crowd Cleaned Campsite rocks around the fire pit for the campsite.

The front of the rocks will read something along the lines of:

“Kailanie’s Crowd cleaned campsite

learn more about our mission at www.navigatinglifewithlms.com “

The back will read:

“Rules for participation:

1. Leave this campsite cleaner than you found it

2. Take this rock, or make your own, and leave it at a campsite you cleaned

3. Do a random act of kindness (optional but strongly encouraged)”

We will try to leave more than one rock behind. This way, anyone wanting to participate has a rock to share at another campsite of their choice.

We are aiming to start a trend to keep the outdoors clean. Our disabled daughter is more than willing to roll her sleeves up and get to work, right along with the rest of the family. I am sure our planet would appreciate more people helping us out.

Final points

Do things that set your soul on fire. Life is to short to do nothing, so make it count. With that said, we hope all or some of the topics above have intrigued you. These ideas have sure ignited flames for our family. We are excited to see a change!

Helping others when we can is something we love to do, and improving our planet is important too! We hope this post will reach others willing to do the same, and help with our mission.

Just a reminder, it cost nothing to be a decent person!

DON’T FORGET!

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