#kasnerskickduchenne endduchenne

[rahrahkaz]

Duchenne IS our Lives

As much as we say we will not let Duchenne define us and our lives, I’m starting to think that is an unrealistic goal and moreover, almost a selfish goal.  What if instead we embraced Duchenne for what it is and all that comes with it (which is more than you could ever imagine) and just lived in the present moment no matter what that brings.

Most think of Muscular Dystrophy and think of the muscles and if you know about Duchenne, you think of those young boys whose muscles start to deteriorate at such a young age. It is true, it’s a neuromuscular disease, that effects the muscles, that gives light to this disease from an outsider, especially as the disease progresses.

At Dunky’s age (4), it’s very few outsiders that would notice something isn’t quite right as his physical differences are nominal.  He may run a bit different, he may slide down stairs on his butt (even in public), he may ask to be carried more often than normal and he may drop his drawers anywhere to go pee because he knows his body can’t make it to a bathroom.  But, he “looks” like a typical 4-year-old.  At Caleb’s age (6), most notice something is different, but they can’t quite tell what.  He’s shorter than most (due to daily steroids), he uses a manual scooter to get around (like a razor), he can’t quite participate in activities like others can, he is self-conscious, he would prefer a pull-up vs underwear, he falls a lot, he can’t climb, he can’t navigate a staircase, he tires as if he has just ran a marathon ALL THE TIME.  Think how hard that is for these kids, and then think how hard it is on those parents who must watch this disease progress and navigate the challenges with them.

Dan is out of town this weekend and while yesterday was a good day, I bet if any other parent or person was along side us for our day, they would not agree with that statement. It started at 6:08 am with Caleb calling for mommy and me negotiating with him to stay in bed until 6:30. Not unlike most kids, but the difference is, he needs our help to get out of bed. So, there is no such thing as helping yourself to a screen for a few minutes so mommy can sleep for a bit longer.  There was constant bickering, screaming and meltdowns between Caleb and Dunky about nothing of importance. Literally about how many stuffed animals the other one has, what color their toothbrush was the night before, what level of some game they are on, what time it is, what day it is, what year it is, anything.  I’m in tears and they are in tears.  So, we write a schedule for the day and decide the goal of the day is to make mommy cry less.

We go about our day and it’s great, but it involves pulling over while in route to various activities to let one pee outside of the car and then 5 minutes later, doing the same for the other.  You see stopping somewhere to go pee in a bathroom with two kids is hard enough with making them wait, getting them both in and out of a car seat and then fighting over who gets to use it first in what is typically just one stall.  You add their disease in the mix, and it’s even harder.  So, we stopped trying, we think we’re pretty good about being incognito, but care less about if someone sees us.

The boys watch their brother play hockey, they cheer on their brother while using me as a jungle gym, while other little kids have the time of their lives running up and down the stairs and around the rink meeting new friends that can do the same.  Nope, not my kids.

We get home and the balmy weather (40 here in Minneapolis) excites Caleb and he wants to put his snow gear on and play outside. Dunky (who fears everything due to anxiety), doesn’t want to put any snow gear on, but wants to stay outside.  They decide to take their scooters and go on a walk around the block. A hard task for boys with Duchenne, but I let them try to accomplish what they have their hearts set on doing. A quarter of the way through, I give my gloves to Dunky since he’s freezing. Half-way through, I have one rolling on the ground saying they can’t walk anymore and the other one begging for me to hold them.  I have no gloves and two scooters, and I honestly stop and think, I’m not sure how we are going to get home.  We decided to take turns.  So, I carry one from Point A to Point B, go back and get the next kid and do the same, go back and get the scooters and do the same. At one point I suggested they just wait there on the corner of the street and I’ll run back and get the sled.  Caleb was convinced someone would kidnap him so that didn’t fly.  A part of me wanted to tell him, “just tell them you have Duchenne and while you are cute, you come with very high needs and super expensive medical bills”, but I refrained.  We continued the Point A to Point B strategy all the way home.  I saved my boys legs, and I got in a work-out.

Since diagnosis, the physical part of Duchenne has been the focus. Just understanding what it looks like, the limitations they have, what they can and can’t do and coming to terms with how awful this disease is to their physical bodies.  But as of late, we’ve shifted into the cognitive part of Duchenne more.

We spent all day in clinical appointments at Nationwide Children’s a few weeks ago. Much of the day was talking about the effects that Duchenne has on the brain. I held strong for most of the day, but this is the part that brought me to tears.  As if the physical aspects aren’t enough, pile on all the behavioral crap that comes with it. And what we talked about; I see in my kids. While Caleb holds more of the autism traits, Dunky holds more of the “everything else” traits.  It’s bizarre and while I used to chalk it up to steroids and better parenting tactics, some of it is just realizing that this is who they are and their bodies inside are a complete disaster, including their brains.  

I watch Caleb make rules, boss his brother around, do crazy math in his head, watch clocks to the second, recall memories with dates from years ago, place things in an exact order that only makes sense to him and cry like his feelings are crushed when something doesn’t go as planned or is out of order.  I watch him fill with worry if someone comes over that may disrupt what he thinks should happen.

I watch Dunky cling on to me for life when walking into a new environment, explaining he’s scared to do what many kids would be excited to do, say zero (literally ZERO) words at school in nearly two years, turn from quiet to this uncontrollable high-pitch scream in a second, bang things against his head and kick and hit and scream as I try to hold him to calm him down from a tantrum.

We are blessed to have clinicians in this field that are helping us to understand that while some of this may be there age, some of this may be the steroids, much of this is due to the lack of dystrophin in the brain, as dystrophin is expresses in brain neurons. Historically, I would dismiss discussions about cognitive ability mostly because Caleb could nearly be a Mensa Member. He literally figured out a math pattern while playing a game faster than me yesterday, and my skill set is math.

So, what does this mean and what are we doing about it?  It means that I used to think putting them in uncomfortable situations that make them act like that would be helpful so they would “get used to it”, but I’m realizing that isn’t a tactic that will be successful for them.  It means play dates are harder and take so much out of the boys and me. It means I don’t get to see my friends as often and it means my dreams that my friends’ kids will be friends with my kids, may not come true.

I know that if our boys’ lives are such that they can’t move a muscle, we will help them and love them and be right by their side, but it’s also why I keep advocating for them and pushing for a cure.  It’s unreal what just a bit of dystrophin could do for their bodies and their brains, such that their quality of life could be exponentially better. So, we pray for dystrophin and we pray for a world free from this awful disease, not just for Caleb and Dunky, but for all kiddos with Duchenne.  Thanks to all of those who love and support us, it takes a village.

[rahrahkaz]

Long Overdue - Dunky Update

It’s been too long since I’ve sat down to write about my boys and all the feelings that come with those cute, little, adorable, naughty and hilarious stinkers that suffer from this awful progressive muscular disease.  It’s time, I can feel when it’s been too long. It’s almost like a tap on the shoulder that suggests I slow down and feel the feelings and live in the moment.  Sometimes it’s easier to just keep going, full speed ahead, but easier is not always the most beneficial. I’m living in this crazy, emotional state.  One day I’m sobbing in my car or after I get the boys to bed, just to wake up with a smile and live another day like the prior didn’t happen.  It’s bizarre.  How can you be so sad one day, yet dismiss those feelings the next? It’s what happens because there is no other option.  I’m overtaken with sadness but know my boys and my family need me to be positive and strong.

This week was hard. We are 7 weeks into school and Dunky will not talk. At all, like zero words. I sat through 90 minutes of an IEP meeting for Dunky (4) and listened to all the people around the table talk about their concerns regarding his perceived “inability” to speak.  They called it (not diagnosed) “selective mutism.” My Dunky, the crazy, silly, naughty, chatty, amazing little boy that flourishes amongst a comfortable environment.  But not school, no way, no how.  Is it his way of showing power?  Or is he overtaken with anxiety?  We think it’s the latter but will embark upon therapy to try to figure that out.

I’m holding back tears while we start to create solutions for helping him “speak” using visuals and hand gestures. For now, it’s the right thing to do to ensure that he can advocate for himself.  We talked about the concerns that being nonverbal while having Duchenne creates. Imagine his muscles are tired or cramped and he can’t take the stairs or struggles to get off the floor, but he is too scared to talk so he forces himself to take the stairs instead of the elevator and fights to stand up on his own, with no help.  Or imagine he has to go potty but is too scared to talk he doesn’t tell anyone and then spends the day holding his pee with slightly wet underpants.

We have come up with some strategies to try to help him and are seeking clinical care for his anxiety, but the truth is my heart breaks for my little Dunky hearing about his struggles. However, today, just two days after this IEP meeting, I receive the picture below.

What appears to be just a cute snapshot of our Dunky brought me instantly to tears, because it has so much meaning. Part of our discussion was that Dunky has yet to fully participate in gym (45 minutes of the 3 hours he is there) and instead chooses to sit on the bench where it’s comfortable because he doesn’t have to talk.  But one of our strategies is to have Caleb, Dunky and Daddy show up 10 minutes early and play together to get him engaged and playing and hope that it continues.  They did that yesterday and today, and this here is the result. This little stinker was riding a Strider bike and NOT sitting on the bench by himself!  There were still no words exchanged, but a small sign of comfort.

So tonight, we are celebrating the small wins.  

Stay tuned for an update on our other crazy, silly naughty, chatty and amazing little boy, Caleb.  This is all my heart can handle for the day.

[rahrahkaz]

How was Halloween?

“How was Halloween?” My response, “Hard.” Just when you least expect it, Duchenne hits you in the face. My kids have had their Halloween costumes for a month and been wearing them almost every day.  They chose costumes from their favorite cartoon, PJ Masks. Caleb was Owlette and Dunky was Catboy.  They have been so excited for October 31st to come, but then it came. It was different than what I expected, and I think different than what they expected or remembered from previous years.

Our neighborhood is the best.  We are surrounded by wonderful neighbors that we love dearly that happen to have kids all between the ages of 2 and 5. It’s cold this night in Minnesota, but that won’t stop us. We all meet in our front yards to take on Halloween and collect candy until they can’t anymore. They first collect special Halloween gifts from the neighbor kids and then move on to the rest of the ‘hood. The first few houses are okay, but then Caleb and Dunky quickly realize that they can’t keep up. “It’s not fair mommy, they are so fast. I’ll never be able to get as much as they get.”  

My eyes swell with tears, but I hold them back and remind them that I’m with them, will not leave them and we will have fun no matter what. There is no fault or blame, these other kids have been dreaming about this same night running from house to house to collect as much candy as possible. I would expect nothing less, no different than what I did as a kid.

We visit a few houses and it’s going okay.  But it deteriorates quickly. It goes something like this:

1)    Caleb starts getting frustrated that he can’t see the candy well enough to pick what he wants through his Owlette mask.

2)    They both start to complain that they can’t pick up the candy with their PJ Masks gloves on, but refuse to take them off because without the gloves no one will know who they are.

3)    Owlette and Catboy start getting cold. They aren’t running like many of the other kids to keep them warm.

4)    The cold starts to stiffen their muscles and the whining starts.

5)    Mom swoops in with the double stroller to help save the day.  No need for those kiddos to walk! We WILL still get more candy, I can promise you that Owlette and Catboy!

6)    Every front door we encounter thereafter brings me closer to a complete meltdown.

You see the double stroller is practically part of our family.  We use it often, maybe even more than we use our cars. Our boys are compact, so they fit in this double jogger just perfectly, even at ages 4 and 6. It’s an apparatus we bring with us everywhere we go. Not because the boys can’t walk, but because if they don’t have another option, they could push themselves too far.  And with Duchenne, a progressive neuromuscular disease, pushing too far can be damaging to the bit of muscle that still remains.

But on Halloween, this double stroller being with us meant something different.  It meant Caleb and Dunky were sitting in the stroller, at the bottom of the stairs of the front doors, while I climbed the stairs to ring the doorbell and say “Trick or Treat” on behalf of my boys. And upon the homeowner answering I found myself saying “My boys have a muscle disease and they can’t climb the stairs, can I take your bowl of candy and bring it to them to pick a piece?”  It looked like this

But do you know how many times you can repeat that phrase before having a meltdown?  I know now and it isn’t many. Three, maybe four.

So the boys and I agree that it’s time to head home. They are freezing and I’m about to burst into tears. All the sudden that stroller is to thank, we get home swiftly. Dan greets us at the door with a smile. It’s that smile that kept me from bursting into tears. The boys are so happy to see daddy and show him all their candy. I continue to survey the room. Caleb and Dunky’s faces are lit with joy and their daddy is happy to embrace them bring them warmth, like only daddy’ can do. I smile and excuse myself to the fire outside at the neighbor’s house that is keeping the adults warm. We warm ourselves with the fire, cocktails and good conversation while Dan puts Owlette and Catboy to bed.

It feels like I’m torn inside out by Duchenne when I least expect it.  I did not expect Halloween to be a time that would remind me of the beast that Duchenne is.  It’s times like these that test my faith, test my perseverance, test my strength. I will not let Duchenne win. I come out stronger and pushing harder and faster for a cure so that one day they may be able to hand out Halloween candy to kids at their own front door.

Thank you to my husband, my kids and my beloved neighbors that lifted me up on Halloween night. It truly takes a village.

[rahrahkaz]

It was me, but I'm still thankful!

Yep, it’s true.  I, Sarah Kasner, am the one who gave Caleb & Duncan Duchenne Muscular Dystrophy.  I am the carrier, and I had no flipping idea.  Quick Genetics 101 lesson.  I am a female who has two X chromosomes, and one of my X chromosomes has a deletion of exons 6-17 in the dystrophin gene, unbeknownst to me.  I’m thankful I’m a woman, because my other X chromosome has stepped in to save the day.  When I conceived my children with my husband (I know, too much for social media), I passed along one of my two X chromosomes and Dan passed along either his X or his Y chromosome.  Upon conceiving both of our children, I passed along my mutated X chromosome (50/50 chance) and Dan passed along his Y chromosome (50/50 chance), making these children boy boys, with no back-up X chromosome.

Boys have one X and one Y chromosome.  If a boy has a mutated X chromosome, he does not have a back-up to step in and save the day like I have.  So those boys are forced to go through life with their mutated X chromosome.  Enter Duchenne Muscular Dystrophy in it’s truest and most severe form.  Enter Caleb & Duncan.

Caleb was diagnosed in April, 2018 and it never even occurred to me that he had this genetic disease because of me.  Spontaneous mutations are real and common.  But when Duncan was diagnosed, I knew I had no hope.  The chances of both of my boys having spontaneous mutated x chromosomes resulting in Duchenne, slim to none.  So here I am, the carrier of a fatal (to males) genetic disease that I had no idea I had. 

The questions that have gone through my head are insane, even though I would never want anything other than Caleb and Duncan in this world. I would NEVER change anything about my boys.  They are miracles and they are angels.  They are my saviors and my loves.  They are my night and shining armor that get me out of bed every single day.  And they make me thankful.  I gave a fatal disease to my two sons, but I’m still thankful, even though I'm saddened daily.

Because of me, these boys will have a life that is extraordinarily harder than everyone else around them.

Because of me, these boys may never play sports.

Because of me, these boys may never have kids.

Because of me, these boys may not outlive their mom and dad.

The list goes on and on, but all of that will just beat me down.

I’m thankful for these boys that may never play sports, have kids, outlive their parents and that are required to live a hard life just to survive.

Holidays are different now because we are fearful that our holidays won’t be what we want them to be in the future.  We let the sugar fairies enter and they eat more sugar than they should ever have.  We let them get a night off of bracing. We cherish the time we have together as a family.

So today I am thankful, for the family that I have. Dan, me, my step-boys (AJ & Ben), Caleb and Duncan. Isn't it better to have kids that will be with us for a period of time than none at all? No parent ever wants to think that way about their children, but that is our reality. But our family will continue to live in the moment and embrace the now.

Thank you for all that are allowing us to embrace the now and for supporting Kasners Kick Duchenne.  We couldn’t do this without you!

[rahrahkaz]

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.