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Discussion Starter · #1 · (Edited)
Yes, another assault build, but this one is a little different. Not just because I want to have the coolest looking sled on the snow, but because I want to use my sled as a moving billboard. You see a couple years ago I found out my daughter Addelyn has a rare, incurable, and terminal disease called Batten disease. My daughter is now 9, completely blind and on seizure medication. This is only the beginning. The worst is yet to come, unfortunately. For now though my Addy is in pretty good health. She can read Braillle, does track with the special olympics and is pretty much a normal kid. She has always loved snowmobiling and was a natural on the Kitty Kat before losing her eyesight. Now we ride two-up together. I had to promise to not do any wheelies though!

Fortunately for me, I get to work with some pretty awesome industry partners. Namely Polaris, Klim, RideWI, ArcticFx, and also my dealer, Leone's Polaris. I figured that since most people have never heard of this disease, and that snowmobile people are pretty awesome people, I would use my machine as a way to raise awareness about Batten disease and my Daughters illness. Hopefully someday there will be a cure, for now all we have is hope for Addy. If you would like more information about Batten disease you can go to https://www.bdsra.org/
Tire Wheel Land vehicle Vehicle Motor vehicle
Snow Tree Outdoor recreation Leisure Slope

Tire Wheel Sky Cloud Automotive tire




So, please follow along and ask questions. There is a bunch of aftermarket parts going into this build along with a custom teal ribbon wrap. I like my sleds to look good, but they have to function as well. I planned on starting this last fall, but the machine just showed up a couple weeks ago. Thanks for looking and say a prayer for Addy!

Direct link to Venmo account setup for Addy. Hope for Addy
 

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Awesome post.
look forward to seeing what you do with the sled. You are doing something great though besides that, being a good Dad. That’s some tough stuff to hear about and it’s good to see people make the most of what they can’t control. Sorry about your daughter and I’ll say a prayer for her. 👍🏻
 

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Discussion Starter · #3 ·
Awesome post.
look forward to seeing what you do with the sled. You are doing something great though besides that, being a good Dad. That’s some tough stuff to hear about and it’s good to see people make the most of what they can’t control. Sorry about your daughter and I’ll say a prayer for her. 👍🏻
Thank you. I appreciate it. You don't know how many trips around the sun you are going to get. I've learned to make them count!
 

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Really puts things into perspective when you hear of people going through these kind of things. Our trivial complaints of sleds not showing up or our daily whining about aches and pains pail in comparison to what your daughter and your family deal with. Looking forward to your build and the education it will provide. Not much of a prayer person but I will be tonight.
 

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I hate to hear stories like Addie's but thank you for sharing. Kid's should just have fun and shouldn't have to deal with health problems but sadly they too often do. I have never heard of Batten's disease but your thought to bring awareness of it is a great idea. It's great that you still bring her out riding and that shows that I'm sure you do many other great things with her so she can live it up and still find great things to do for fun with her father. You're a good man and I wish you all the strength to keep doing all the good things in life with her. Keep your chin up buddy. I look forward to seeing your build. Again.... Great idea!!
 

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Way to go Dad and prayers for your daughter and your family.
 

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I'm at a loss for words. put's things in perspective. life is fragile and short. the dumb things we worry about like our sled not coming in time etc. doesn't mean anything. family and your health are by far the most important things. awesome job your doing. it takes a very special person to deal with the hand you were dealt. text me your name and address. to 603-662-7370 i would like to help with your sled build. god bless you and your family. what track is on your sled?
 

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I'm at a loss for words. put's things in perspective. life is fragile and short. the dumb things we worry about like our sled not coming in time etc. doesn't mean anything. family and your health are by far the most important things. awesome job your doing. it takes a very special person to deal with the hand you were dealt. text me your name and address. to 603-662-7370 i would like to help with your sled build. god bless you and your family. what track is on your sled?
That’s pretty awesome of you to offer. Absolutely correct on the little crap we whine about and no one knows when our time is up on this earth. It’s sad to see anyone sick, worse to see an innocent child. We all can count our blessings with health! Nothing more important than family and I have to say what you are offering makes me gain a lot of respect for you.👍🏻
 

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Discussion Starter · #18 ·
I'm at a loss for words. put's things in perspective. life is fragile and short. the dumb things we worry about like our sled not coming in time etc. doesn't mean anything. family and your health are by far the most important things. awesome job your doing. it takes a very special person to deal with the hand you were dealt. text me your name and address. to 603-662-7370 i would like to help with your sled build. god bless you and your family. what track is on your sled?
Wow thank you Rick! Very much appreciated! I remember back when your girlfriend was sick and a bunch of us donated to help with bills and such. Thank you for returning the kindness!
 

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Discussion Starter · #19 ·
Prayers up for Addy!
Pretty cool build and purpose!
Maybe throw a personal touch in for Addy somewhere on the sled. Something like a Braille saying that is meaningful to the two of you. Place it on an area of the sled that she may frequently touch as a reminder/tribute to her ?
That's exactly what I have planned! How did you know! I already have the braille printed on the wrap. Now I have to figure out how to put something underneath the vinyl that will stick up when covered. And it can't look like crap.

The part of the wrap with the braille will be in the fuel tank under the seat. Open to suggestions if you guys have anything in mind.
 

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Yes, another assault build, but this one is a little different. Not just because I want to have the coolest looking sled on the snow, but because I want to use my sled as a moving billboard. You see a couple years ago I found out my daughter Addelyn has a rare, incurable, and terminal disease called Batten disease. My daughter is now 9, completely blind and on seizure medication. This is only the beginning. The worst is yet to come, unfortunately. For now though my Addy is in pretty good health. She can read Braillle, does track with the special olympics and is pretty much a normal kid. She has always loved snowmobiling and was a natural on the Kitty Kat before losing her eyesight. Now we ride two-up together. I had to promise to not do any wheelies though!

Fortunately for me, I get to work with some pretty awesome industry partners. Namely Polaris, Klim, RideWI, ArcticFx, and also my dealer, Leone's Polaris. I figured that since most people have never heard of this disease, and that snowmobile people are pretty awesome people, I would use my machine as a way to raise awareness about Batten disease and my Daughters illness. Hopefully someday there will be a cure, for now all we have is hope for Addy. If you would like more information about Batten disease you can go to https://www.bdsra.org/ View attachment 2133855 View attachment 2133857
View attachment 2133854



So, please follow along and ask questions. There is a bunch of aftermarket parts going into this build along with a custom teal ribbon wrap. I like my sleds to look good, but they have to function as well. I planned on starting this last fall, but the machine just showed up a couple weeks ago. Thanks for looking and say a prayer for Addy!
First and foremost after reading this post you are a awesome individual and a even better father. I couldn’t imagine being in your shoes and maintaining the composure that you do that is something very special my friend.
Here I am a big tough guy but when I read your post I have to admit I was tearing up and I am now while typing.
If there is a foundation or a cause for Addy’s disease please post the information I will gladly make a contribution.
God bless you , Addy and your family.
‘Gary.
 
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