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April 9, 2019

We want to say thank you all so much for your love and support.

It has really helped us channel the positive energy into something new.

Follow Ethan's story and more on our new website and advocacy brand for DMD HeldwithHeroes.com

Genetic Results

This might seem weird, but the last 30 days flew by. It's a sobering reminder of how short life is for all of us...

Life seems to flash before our eyes, quite literally, and when you least expect it.

In the last 30 days we've been hit with relentless tsunami waves of emotion. It comes from nowhere. Just when you feel you can’t possibly feel any more, it hits you.  It hits you and drowns out everything else in life. It's the deepest sadness, confusion, and at times, anger. The deafening sound of silence.

In the last month, while waiting for the genetic analysis results, we've been busy. Busy with a lot of changes in normal life, and things to think about for the future with the reality we might not get to forget...

In addition to putting our little  Pom-Chi(dog Vida) down after 12 great years of life, Emi(5) started Kindergarten and is now riding the bus to school!

You can imagine, as a five-year old, she has lots of questions about "where's Vida?" Nearly every day both kids ask "where is she?" In short, the last month has been about finding the best ways to explain to young minds the emotions Mommy, Daddy, and family have about things that make us sad. This isn't easy, and the ripples are big already. Emi and Ethan both, are quite keen to the fact that something is different. Not just the dog, but doctor visits for Ethan and the heightened awareness we have for Ethan's day to day discomfort. With lots of little changes, they end up amounting to a lot.

In the evenings, we each take a little-one and lay in bed reading stories. For Emi, we lay in her Queen sized bed. With Ethan, he has a single bed, so it’s easier to lay in our bed. There's also more room there where we make a nightly routine of stretching and light massage for his sore leg muscles.  Nearly every morning, Ethan wakes up between 4 and 5am or so- and stiff legged - makes his way to our room and crawls into our bed moaning a bit about sore legs. By the time Emi wakes up, and from what she sees, Ethan got to sleep in our bed. We're fighting every day to find new ways to help Emi see she is just as important and help her understand that Ethan doesn't sleep in our bed.

Last week, we made a dash to the ER with Ethan after fever and several hours of grunting in his breath and crying out in pain holding his tummy. He had just started antibiotics for strep 2 days prior and his fever spiked back to 101. Not to mention he had strep 30 days before that.  I thought for sure it was his appendix...  After 5 hours in the ER getting blood tests, xrays, blood drawn, and an IV. They ruled out his appendix or anything infectious going on. His fever was controlled, and the IV helped re-hydrate him. They weren't quite able to pinpoint what was going on, but was likely constipation or related to (the possible) DMD and muscle cramps.

For Emi, this was another milestone. Seeing her little brother at 10pm getting an IV, and blood drawn multiple times. It was (and is) amazing to see her every day becoming a natural caregiver. She’s blessed with a kind heart, and significant sense of selflessness. She's already quick to let her brother get the first freezie, last cookie, rubs his back when he's tired, and encourages him with excitement about him getting to ride in the stroller at the arboretum. Leaving the house for school and getting on the bus has been exceptionally hard. She really just wants to stay at the pre-school with her brother where they've had the chance to play together throughout the day for the last 3 yrs.

This week, the reality hit us. Last week, we got the call from our doctor at Gillette Childrens with our exam results. We missed the call initially, and left messages every day last week, until Monday this week, when we got a call back. Those days in-between were absolutely painful. Knowing the doctor has the results but was too busy to call back...Or did he want to give us a few more days of heightened hope this was all a mistake....?

On Monday 9/10, we got the call back. By chance, Katie and I were both at home. The doc apologized immediately for not calling back the week before and shared with us he had a nightmarish week and didn't want to call at 10pm when he finally had time. He went on and reviewed some of the technical details in what the tests were looking for.

Every cell in the body has a nucleus. In the nucleus, boys carry XY chromosome pairings. Females carry XX pairings. Each X Chromosome contains over 800 protein-coding genes in a string of DNA. Of the 20,000 genes in the human genome, the dystrophin gene is one of the largest and is always associated with muscular dystrophy.

Dystrophin acts as shock absorber for the muscle and gives muscle fiber rigidity. The Dystrophin gene has known hotspots for mutations. Usually, something is deleted or duplicated. Of the 79 exons (sections of DNA) that make up the dystrophin gene, there are some natural repairs the body can do on its own if something is missing and certain exons are compatible to re-connect from the missing link. In certain cases, some very cutting-edge technology with genetic editing (CRISPR-Cas9) or life-long gene transfer therapies can skip the non-compatible exons allowing for the natural re-connection. These treatments can slide the quality of life up the scale significantly higher.

 We were hoping and praying this was the case and Ethan’s diagnosis would fall in a category that would offer a concrete treatment plan.

 Like a vehicles shock absorber, there are critical components. Both the top and bottom mounting brackets. Without them, the vehicle will shake apart. But IF you have a shorter spring, it just means the ride feels different. A bit more bumpy perhaps, or slow and less responsive. Many of the latest and greatest clinical trials involve highly controversial legal aspects of genetic editing but are opening doorways for kids who have mutations in the spring. Editing the ends of the gene are much more controversial and likely carry more risk. Keep in mind we’re talking about an entire category of clinical trial therapy that are “human experimentation at its finest”.

 It turns out, that there’s a very specific type of mutation we hadn’t quite talked about with the doctors yet.

We’ve now learned Ethan has a Dystrophin gene Exon #12 nonsense point-mutation. This type of mutation in exon 12 has only been seen (according to our doctor) in 4 other cases he could find research on. Non-sense point mutations are unique in that they just stop at the given Exon. In Ethan, his Dystrophin gene has only the first 12 exons. He’s missing the final 67 exons and quite importantly for treatment options, the final exons which include a binding site (shock absorber mounting brackets).

 The largest issue with this type of mutation is that the body needs a very large portion of DNA code to be delivered to the cells because it’s such a large gene in the human genome. Many of the technologies for gene editing and therapy are delivered through a virus with a genetic code set as a payload to each cell. However, the size of code needed for this type of mutation can’t fit in a virus. It’s like trying to haul a shipping container with a Honda. If some of these gene therapy clinical trials work by delivering a partial gene, it would change DMD into a less severe muscular dystrophy called Becker’s which would slow down the rate of muscle deterioration over a longer period of time.  Currently there are no treatments or cures for DMD, no matter the gene or mutation type, all therapies are in Clinical Trial phases.

 We remain hopeful that the research around gene transfer therapy continues to expand.  We’ve already found a team of scientist from multiple countries teaming together to design a better delivery mechanism for the sheer size of the dystrophin gene.

In the meantime, we're going to War. We’re fighting tooth and nail to make sure that Ethan’s story is heard. If not for Ethan, then for the next little boy who will get the opportunity to live life with more options at hand.

The realities begin to set-in... We need to re-think our house. It's not suited for a powered wheelchair and medical equipment. IF clinical trials and eventually become available, we would likely need to travel to the hospital or live there during treatment. Many of the experiments are being done out of the state...and country...

While we have no clue what to expect, we're taking a day at a time. Yesterday we went out and splurged on a John Deere 12v 4x4. Both Emi and Ethan were in their happy place for hours last night, riding into the sunset together....

He calls us out upon the waters. The great unknown where feet may fail. And there we find him in the mystery, In oceans deep, our faith will stand.

We call upon his name, and keep our eyes above the waves. When oceans rise, our souls will rest in his embrace, for we are his, he is ours.



Jon and Katie


P.S. A great song of prayer…


You call me out upon the waters

The great unknown where feet may fail

And there I find You in the mystery

In oceans deep

My faith will stand


And I will call upon Your name

And keep my eyes above the waves

When oceans rise, my soul will rest in Your embrace

For I am Yours and You are mine


Your grace abounds in deepest waters

Your sovereign hand

Will be my guide

Where feet may fail and fear surrounds me

You've never failed and You won't start now


So I will call upon Your name

And keep my eyes above the waves

When oceans rise, my soul will rest in Your embrace

For I am Yours and You are mine


Spirit lead me where my trust is without borders

Let me walk upon the waters

Wherever You would call me

Take me deeper than my feet could ever wander

And my faith will be made stronger

In the presence of my Savior


Spirit lead me where my trust is without borders

Let me walk upon the waters

Wherever You would call me

Take me deeper than my feet could ever wander

And my faith will be made stronger

In the presence of my Savior


Spirit lead me where my trust is without borders

Let me walk upon the waters

Wherever You would call me

Take me deeper than my feet could ever wander

And my faith will be made stronger

In the presence of my Savior


I will call upon Your name

Keep my eyes above the waves

My soul will rest in Your embrace

I am Yours and You are mine


Holding on to The Hope of Glory - 8/8/18

While we may never know (here on earth) why some stories are different than others, we all know that each day is a blessing, and our ultimate instruction is to seek a purpose in our creator’s kingdom.

Something was different… Something was just a little different in comparison to our first. We noticed something was just a little bit different in the way our little man was[is] developing. As a parent, you rule out any major issues quite quickly. After birth, with the number of tests and information, it really drives home a feeling of comfort knowing we have a healthy and happy baby.

You know; the feeling of – YES, we got lucky. What a gift from God. One of each, a healthy beautiful girl, and a healthy beautiful baby boy.

Along the way, your worst nightmares haunt you. Those flash forward moments. Those stories of tragic accidents while on adventures in mountains, or with friends out late on the road, swimming in a pool, or the terrible and sudden loss of child from a drug overdose.

And…when you wake up, you can breathe again....

Over the last year, we’ve had some concerns about Ethan’s motor skill development. We noticed stiffness in his hips and weakness in his core that ultimately raised some questions in Ethan’s 2 and 3 year well appointments with his pediatrician. Each time, our questions and concerns were quickly dismissed. The average “normal” window for walking can be 8mo -24mo. Ethan was about 22mo. “He’s just a little delayed”.

I said pretty quickly - that’s no problem. He needs more protein. He needs more time, He needs more time at daddy boot camps; running the bases, climbing bleachers, flipping tires at the stadium field, ripping our shirts off and pounding our fists on our chests to summon more testosterone while grunting like gorillas and laughing as our voices echo back from the tall stadium walls.

About two weeks ago, after pushing for (and demanding) an orthopedic referral we were finally at the doc. In the middle of some awkward gas[toots], Ethan passed all the tests and his bone and ligament structure looks great via x-ray. His hips are in place correctly, and no displacement during birth. No sign of cognitive issues. Awesome! “Just a little delayed in walking, which delays running. His body is bigger than an 18 month old who has been walking for 1 yr. SO, it’s just easier to see the nuances.”.  Ok great. Wonnafull!  I can’t wait to get back outside, and chase that little monkey around with that little mini football in his hand across the stadium 50 yrd line – field of dreams…

The next step was to start PT and really make sure we are helping him the best we can. I’m growing a little athlete here. We will do it all.  

Along with PT, the doctor solicited a neurology appt and explained that we wouldn’t need to, but just to dot our i’s and cross our T’s, Neurology can run some blood tests and just make sure nothing else is going on. We just wanted to rule everything out, but everything looked great and Ethan would no doubt have the same opportunity as his peers.

On Tuesday 8/7/18, at 11am we were back at Gillette Children’s in Minnetonka  - which is just a stone-throw from New Horizon Academy, and both Katie and I’s offices. Easy-peasy. Quick blood draw, and we’ll be off to celebrate with Jimmy Johns.

By 11:30 we were fighting his routine bowel movements. Again, right in the middle of gross motor skills testing. Awesome! What a dichotomy. 85% potty trained, in a pull up, “just-in-case” for the doc appt, he wants to hold it when we go to the bathroom, but as soon as we’re back in the rooms – twice over – he starts pushing again. WHY ON EARTH do they not have a step stool in the only bathroom at a Children’s clinic to help reach the sink? Thank God they skipped the automatic flushers! Those automatic flushers scare the SHIT out of our kids. Well- actually, it’s too bad they literally don’t!

Ok – So we sit down after the motor skills test and Dr. Cassie, very clinically, explains our feelings as parents to us – And I’m thinking, OK. I get it. She’s explaining that this is a normal case of parental paranoia. They see it all the time. Go Home and relax. Right? Except, that wasn’t the case. We went there to get a blood test. Oh, and now we’re hearing what that will test for and the correlations to different things that she could identify from watching Ethan for a few short minutes. However, she seemed optimistic. Basically, “just to be sure”.

After being directed to another medical center where they could run some very specific tests and the whole gamut of analysis - 2 hrs later - Ethan was watching the blood taken from his vein. Staring down the needle, just holding my finger. Not a whimper.  He even got a Band-Aid to match his bright yellow shirt. Pretty cool. He strutted all the way back the car as we first-bumped each other around every corner.  We proceeded to Target to pick a new toy…

That evening, I received a voicemail from the neurologist. She left her cell phone number and we coordinated a time where she could have her kids settled down with dinner on the table, and I could do the same.  Unfortunately, Katie was at a work conference downtown Minneapolis and I happen to take the kids to Papa and Mimi’s to have a spontaneous dinner with the cousins. She was very matter of fact and reviewed what we discussed in clinic again and then shifted to the test. The test showed that Ethan’s blood contains an elevated level of creatine kinase (CK). CK is a byproduct of muscle waste. When we exercise, our muscle breaks down and rebuilds. CK is elevated when the muscle breaks down. Normal range is 5-300 U/L. Above 2k is high. Body Builders and marathon runners can experience levels as high as 3-4k after traumatic training sessions.

Ethan’s CK levels were reading above 7,000. Dr. Cassie quickly let me know she really wanted to call and discuss the results because Dr. Richardson (the best around and “The Guy”) has an opening the next morning 8/8/18 at 11am in the Gillette Children’s St. Paul Location, and her extended team specializes in genetic testing and analysis for muscle disease and they would be available for a coordinated visit. I immediately took the appt and followed up with only one question. “Are you telling me this CK protein is only elevated if muscle tissue is decaying?” The answer was a stern - Yes. And followed up with some statistics.

All we know is that these levels don’t appear in small children without some form of muscle disease. The statistically safe path or probability of this being a non-life altering diagnosis was something like half of the 10% of the 10% who fall in this category; can sometimes see this lifestyle….but…. if… and sometimes…

Thank God I was in a safe place with Papa, Mimi, Aunti Andree, Corey, and the kids were distracted.

How was I going to tell Katie?

Ultimately, I’m realizing that writing is very therapeutic and could go on and on…  there will likely be more to come… I’ll try to wrap this up for now… - I’m in need of a workout!

On Wednesday, 8/8/18 they confirmed Ethan’s CK levels at 26,000 U/L and walked us through the narrow path of possibilities. Everything points to some form of muscular dystrophy and very likley duchenne muscular dystrophy (DMD).

Dr. Richardson’s first question was: What are the chances you two (Katie and I) are related?  It felt so good to laugh. But he was serious! Dismissing this as a probability, he then diverted to a story from an old Lone Star movie about two distant relatives falling in love…LOL.

The next step is to run genetic testing (4-8 weeks to get results) and identify the muscle groups this may impact. From there, this will just provide a small window of what we can expect moving forward.  Initially, we do know very likely he will continue to develop for a year a two and make forward progress with gross motor skill development. Specifically walking. There’s very high likelihood this will NOT impact his cognitive abilities whatsoever. We’ve been told wheelchair bound should be expected with a high probability by age 12 +/-4 yrs. Maybe sooner, maybe later…

For now, we need your prayers. We need to pray for a miracle only God can provide. Either supernatural or a technological breakthrough by doctors he’s prepared to understand this disease. We need this little man to be the outlier. We need him to be the exception. We already pray his story; one way or another, impacts thousands of lives as we continue to share. We’ve all been put here with a purpose. Katie and I are just so thankful for the support system around us with Friends and Family and are so blessed to be the best of friends as we navigate this journey of life. We will keep you posted as we find out more.


Jon and Katie

P.S. Katie and I are most certainly not related.

Attached:  Ethan showing off his cool Band-Aid telling me he's a tough guy on Tuesday