Emileo’s Story

Site created on July 8, 2018

Hi Everyone!  Thanks for listening to my story!  I'm hoping to give you an idea of how I ended up here, and what you can do to help.   For specific ways to help right now, click here: https://www.gofundme.com/tm6crk-leo-the-lion .  I also have Venmo, Zelle, and GooglePay if that's easier.  My email is lukas.murchie@gmail.com.

I was born on June 4th, 2018 and life was awesome.  I met my parents, my brothers, and everybody seemed super cool.  My entire family thought every little thing I did was the most amazing thing they'd ever seen.  I'd yawn and they'd go "Wow! He just yawned! Isn't God amazing!"  I'd poop and they'd say, "There you go little buddy--nice work!".  Grandparents, Aunts, Uncles--Everyone would hold me and tell me I was beautiful, precious, and perfect.  I've already seen some amazing places like Iowa and Nebraska.  Nebraska in particular was super fun to visit.  Honestly, I had only been in the family a couple weeks but I was looking forward to being a part of what seems like an amazing group of people.

Then, on Thursday, July 5th, my mom and dad noticed that my breathing seemed rapid.  To be honest, I was feeling it too.  My dad called the Nurse Line and she told him to call the paramedics.  The ambulance came and took me to the ER.  Mom joined me in the ambulance and dad/big brothers followed behind.  That nurse from the nurse line saved my life because I went into shock on the way to the Hospital.  If I didn't get there when I did, I very likely would not have lived through this. 

Here's What Happened:

Both my mom and dad happen to have a small error in the same part of their DNA, and they both passed this error on to me.  The section of DNA that is messed up is the section that codes for a protein that breaks down ATP outside of the cell into 2 smaller molecules: AMP (adenosine monophosphate) and Pyrophosphate.  Pyrophosphates play a big role in regulating the calcium in our bodies.  Since I have virtually no pyrophosphates, calcium builds up in my heart and other arteries.  This build up put way too much pressure on my heart, and it basically shut down.  As mentioned, I nearly died.  

I have something called Generalized Arterial Calcification of Infants (GACI). 

The crazy part is that GACI is "ultra-rare".  In fact, there are less than 200 cases in the medical literature.  Statistically, probably 1 in 400,000 babies have this, but many times we don't know because babies frequently don't live long enough to obtain a diagnosis, and babies that pass are thought to have dilated cardiomyopathy which is actually a secondary issue caused by GACI.  Frequently GACI goes undetected.  I only found out because my parents agreed to partake in a genetics research project being conducted at the hospital. 

The sad news is that there is no cure.  There is a medication we can try, but as of yet, there is such a small research base, there is no real way to know if this medication has any impact or not.  Some bodies resolve the calcium on their own.  It seems like if I can hang in there for the next 6 months, then I have a much better chance of sticking around. 

Honestly, this sucks.  I want to go home and play with my brothers again.  I miss them, and I miss being held by my mom and dad.  Thanks for taking the time to read about me, I'll keep you posted as things move forward. 

Newest Update

Journal entry by Kristi Murchie

Hello friends.

Happy summer!  We hope this post finds each of you well and enjoying the rhythm of what summer holds.
We thought it would be worthwhile to fill you in on our Murchie family happenings since, well, I am still working on the website/blog I mentioned in our last post and life moves faster than I tend to process. 

As the title of the post indicates, the Murchie's have moved to...wait for it...Bethel, yet again!  I know, can you believe that we moved back to campus!?  Now do not worry your little hearts, I have not lost my mind.  Student development has always been a passion of mine and I was offered an opportunity to continue to expand my learning as a professional as I accepted a job to work as the BUILD Residential Supervisor for 2nd Year Students.  This program at Bethel "provides a supportive and comprehensive educational experience for individuals with intellectual disabilities". I will be working specifically with students in the BUILD program who are in their second and final year on campus as they move towards graduating with a Certificate in Applied Studies.  I will work closely with the students to encourage their personal education and learning while on campus.  I am thrilled to be a part of something that provides opportunity for those that society can tend to exclude.  For anyone interested in learning more, I highly encourage you to visit their website (https://www.bethel.edu/academics/build/).

As this position provides exciting new opportunity, it has also been a true mix of heavy emotions this month as we have prepared for this move.  Obviously, our time at Wyndham Circle with Luke's parents is deeply connected to Leo.  Most of his living life in the world was there. It is hard to even imagine that this time last year, Leo was in the process of being discharged from the hospital, a month that started with unbelievable trauma and then seemingly, stepping towards healing.  Wyndham Circle was and will forever be wrapped in Leo's story and leaving it felt weighty in a different way.  Of course, we carry Leo with us, literally, as the boys bring gifted lions from place to place and figuratively, as we know who we are was changed by him and his story and we hold that with deep sacredness.  Even still, to anyone outside of our everyday, it could seem like we are 'doing better' by making this change which tends to provide some sense of relief that this will not over take us.  In actuality, we are 'moving on' with our lives as we make this change but it is hard not to feel that this language is limiting to what we actually live and experience everyday as we make any change.

Moving on?!  No one ever moves on from loss, especially like this.  We move forward because that is what life requires but moving on somehow indicates that we leave him behind.  Norah McInery talks about this difference in her Ted Talk (https://www.ted.com/talks/nora_mcinerny_we_don_t_move_on_from_grief_we_move_forward_with_it?language=en)  I recommend if you want some perspective and she is also very funny in her podcast, "Terrible, thanks for asking."  

I was trying to find an analogy that would give people a sense of what this feels like.  My mom, early on after Leo died, sent us a post from someone connected to her that lost someone special to them and the writer wrote about it feeling like his loss made him feel like he was walking with a limp.  Some things in the story resonated but I kept feeling like it wasn't enough to describe what everyday feels like to me.  So, as Luke and I sat and watched Grey's Anatomy over the course of the last few months (maybe healing or maybe torture), there is a character, a doctor, who loses their leg in a plane crash.  As we watched her make her way back to some sense of what life was like before, I could not help but feel like this is what it somewhat feels like for us each day. 

We have lost a limb (Leo).  It sometimes feels like that limb is still here with us in reality.  I sometimes wake up feeling for him next to us sleeping or talk to him as if he is here.  It's like the phantom pain many amputees talk about, there, but not really there.  The denial stage of grief has also played a role for us.  It wasn't that I did not know he was gone but it felt bigger, like, is this really my life?!  I fought the idea that it was for a while.  Then, the idea of "rehabilitation" for our lost limb was not really in the my sphere of thinking much these past 9 months.  We have just been wobbling around, hoping this was not our life.  

And yet, as life beckons on, we had to start considering our options if we were not going to shrivel up and die ourselves.  So, we moved forward with some things and I wonder yet if this is what it feels like to be fitted with a prosthetic limb.  We know and sense the loss all the time.  We are trying on something new and we will continuing to feel the loss even with something new.  Every step we take with this new fake limb helps propel us forward and yet there is no getting around the fact that our limb, Leo, is gone.  

Well, anyways, I feel like you get the point.  We are slowly finding a way forward.

That's probably enough for one post.  Thanks for taking the time to read this.  I wanted to also share some photos from Leo's 1st birthday celebration. (Photo credit goes to Gus Tiffer)

Much love to each and everyone of you.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Emileo Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Emileo by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top