How YOU are helping!
Yes, YOU! If you are reading this, you have likely supported the Kasners Kick Duchenne and the Kasner Family in some way or another and it’s our time to step back and say THANK YOU to everyone. It is nearly daily that one of us has a story to share about how we feel loved and supported with this community I’m not sure we knew we ever had. Whether it’s the $1 we received from an elderly woman through an exhibit at the Uptown Art Fair, or the $100’s we received from kids through a Lemonade Stand, a Hug Box (bomb org, BTW) or the U of M Spirit Squad committing to our family, or the strangers that read our story and just want to help or the generous donations we are receiving to help with expenses, it’s all helping. It’s bringing smiles to our face and tears of joy to our eyes to know that we are not alone.
I wanted to share a few ways that we are using some of the funds that are being generated because this part is real, and it won’t go away:
Food, food and more food. Our kids need to eat different, so our family is eating different. It’s organic, it’s healthy, it’s rewarding, but it’s expensive!
PT items. Slant boards and special lights they get to entice them into their daily stretching routine).
New shoes. With new AFO’s come new shoes due to wear and to fit.
Strollers. Turns out the strollers we thought we could retire soon are our new best friends. I’ve always had a love affair with my Bob (my running stroller) but we needed different types of strollers to help us maneuver the airport and crowds to give their muscles a break when most kids don’t need one.
Dates with Dan. The importance of connection while raising kids with special needs is real.
Family date nights. The convenience of a meal out for all 6 of us goes further than we ever thought. It always encourages some special family time.
Travel expenses. The Duchenne experts are everywhere.
Drugs. The steroids my boys need are not yet available through insurance.
Attorney costs to set up Special Needs Trusts.
New trikes eventually motorized scooters so they can keep up with their friends and not always feel defeated.
Burleys. Dan and I love to bike so now we each tow a kid in a burley, and those Solo Burley’s are comfortable and pricey!
Vacations and memories. It will get harder and harder to travel, especially with two boys with this disease. No better time than now to travel and make memories.
Vitamins and supplements. They know they get 7 “vitamins” a day, not including their steroid. What they don’t know is I’m also shoving stuff into other things they eat.
Housing expenses. We are already thinking about how to adapt our home in hopes that we don’t have to move from our loving and Kasner-customized South Minneapolis home. This includes everything from building an extra bedroom for Minnie or the babysitter to widening doorways, to re-doing bathrooms for accessibility (even if they were recently redone), to thinking about a small pool without interrupting our U of M Sport Court, to way to get in and out of the house easier. It goes on and on.
Everyday I am overwhelmed by how much I want to do to help my boys and fight this disease, but it is very apparent that we can’t do it alone. Not me, not my family, not my extended family, not my friends, but truly this larger community that is stepping up and showing up. To say “let me know how I can help” is turning into “this is what we are doing to help." That’s commitment and that’s love and that's helping!
We can't thank YOU enough. It all matters and unfortunately, this is just the beginning. Stay tuned for so many more ways YOU can help Kasners Kick Duchenne.