Fight for a Cure

Today is World Duchenne Muscular Dystrophy Day.  This is the first year I have heard of a day being devoted to DMD and perhaps it has to do with the Jerry Lewis Telethon no longer being aired.

Most people do not know what Duchenne Muscular Dystrophy is.  Many people have mistaken it for Multiple Sclerosis, which is also a neuromuscular disease but is not the same.  DMD is a genetic disease when muscules are missing a protein called dystrophin.  Without this protein, muscles cannot fully develop and they eventually start to deteriorate.  Unlike other types of MD, Duchennes attacks muscules all over the body, not just the legs.  The arms become weak, along with shoulder, abdominal and back muscles.  Being the monster that this disease is, it also goes for vital organs, such as the heart and weakens muscules that help us to breathe, such as the diaphragm.  Many boys succomb to the disease from pneumonia or heart failure.  As back muscles weaken, scoliosis sets in, making surgery necessary.  Without spinal fusion, which is very risky and involves a titanium rod being put into the back so it can be kept straight, the spine continues to compress which makes it difficult to breathe and puts stress on the heart.  Many of the boys have to use ventillators to aide in breathing earlier on without the spinal fusion.

Muscles that we take for granted to aide us in our balance so we can sit up straight deteriorate making it impossible to sit on a chair without support.  Without the ability to stand, many families use special lift systems to help transfer their kids from bed to chair and even to use the bathroom.

Summer Camp at Seeley Lake
Making friends at camp

 

Duchenne MD takes on its full form in males.  My mother has a more aggressive mutation of DMD and she has lost a lot of muscle in her legs and arms.  She has fallen and injured herself and we are looking at making modifications to her home in the future to insure her health and safety.  I have symptoms but they are not as severe as my mothers and I hope I can keep them at bay by being proactive with a plant based diet and plenty of walking.  We recently found out that my youngest sister has the disease and it was passed on to my 10 month old nephew.

Me, my sister Sonja who is also a carrier and Damian who has been recently diagnosed with DMD

 

Duchenne MD, along with many other neuromuscular diseases, takes a tremendous emotional and financial toll on families.  The spinal fusion surgery is a six figure procedure and a power wheelchair can cost well over $15,000.00.  This doesn’t account for lost wages because unless a good caregiver is available, one parent has to stay home to care for their son.  There are also regular visits to the cardiologist and pulmonoligist along with physical therapy.

Drew preparing for a breathing test

 

We lost our oldest son, Christian, in 2014 to this disease.  His heart became too weak and he had a great deal of trouble breathing.  My other son, Andrew, continues to deal with the ongoing weakness and complications related to DMD.  He has days when he is in a great deal of pain and most boys cannot take large amounts of painkillers because of the side effects.

Christian had to spend a great deal of his last year tilted to control his pain.

 

The Jerry Lewis MDA telethon has raised millions to aide in research so we can find a cure to this disease, along with other neuromuscular diseases.  It was heartbreaking to hear about the end of the telethon.  We now have to think outside of the box for ways to raise more awareness and to continue to fight for a cure.  There are several different methods being studied with some actually showing improvement for some of our boys.  It still has a way to go but we must not lose hope.  I, along with many other mothers and fathers that have to live with this disease every single day, do not want this day to be lost among the other fun, national holidays – National Hug Your Cat Day or National Pizza Day.  Please donate to your local MDA events, such as Fill the Boot and the MDA lockups to support statewide summer camps and MDA Clinics.  The clinics are very important, especially for people who live in such a spread out state like Montana.

We have had to watch the boys lose friends from MDA camp and in turn fear for their own future.  I have created a Facebook group so us moms can support each other during difficult times and give each other ideas as the disease progresses.  With enough awareness and scientific research we can beat this disease and give our boys hope.

A Fight to the Finish

Today, a young man named Jacob passed away from complications due to Duchenne Muscular Dystrophy.  I have been connecting with his mother, Apryl, on Facebook for the last few months.  Since Christian passed away in October, I have been able to connect with other mothers who have lost a son to Duchenne Muscular Dystrophy (DMD) or are still fighting the battle like I am.  Andrew is 20 and he continues to fight every day despite seeing his friends pass away and losing his best friend, his brother.  A kind woman, who is also named April, mailed me a drawing of Christian.  Her son passed away earlier in the month and despite her pain and grief, she sent me a beautiful drawing.  I have also had the blessing of being able to help another family in Montana by connecting with yet another April on Facebook.  Christian loved helping others and I knew he was smiling from heaven when April’s family came over to pick up his electric lift, intercom system and other things that would bring a smile to little Tyler’s face.

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So many lives lost.  Ever since the boys were young we would hear about their fellow campers passing away.  Some as young as 15, some in their early 30’s.  Either way, it’s just not fair.  It made my heart heavy to hear the boys talk about their fellow campers and friends who had passed away.  Friends they laughed with and could be completely themselves with.  I see their faces but I cannot remember all of their names.  I recognize them when I look through the MDA camp photos from years past.

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Christian and Mikey at MDA camp in 2004
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Christian, Ryan Clinch, Andrew and Mikey at MDA camp in 2004

Since Christian passed away, I have felt this inner pull to do something.  I read something a few nights ago that said not to waste my pain.  I started a Montana Duchenne Muscular Dystrophy Group on Facebook and I will continue communicating with other families and encouraging everyone to support each other through such a difficult battle.  My husband thinks I need to write a book.  As frightening as that sounds, perhaps the best place to start is right here, on this blog.

All I know is we need to learn more about Duchenne Muscular Dystrophy – what it does to the young men’s bodies as it progresses, how it affects family and communities and what we can do to support each other and eradicate this monster.  There is so much research going on that it makes my head spin.  Perhaps if more of us learn about DMD and support research through the telethon, lockups, fill the boot and buying shamrocks, we can find a cure.

Rest in peace Jacob, Natoma, Mikey, John, Keith, Christian and all of the young men who have fought the battle to the finish.

Christian and Mikey
Christian and Mikey were pals at camp

Battleborn

Ever since the tragedy in Connecticut, I have felt lost, betrayed, sad, anxious and in other ways that I have trouble finding words to describe.  I am sure many of us feel this way.  I have been unsure of what to post until a few minutes ago when Battleborn by The Killers came on while I was finishing up the dishes.  I stopped mid track to really listen to the lyrics:

You lost faith in the human spirit

You walk around like a ghost

Your star-spangled heart

Took a train for the coast

This is exactly how I have felt at times.  Anyone else?  How about:

When you shine you’re a hilltop mansion

So how’d you lose the light?

Was it blown by the wind,

In the still of the night?

I have felt like my light has been blown out and I caught myself cursing the darkness last evening when I went on a rant about guns.  All it did was make me more upset.  Cursing the darkness is futile, wasteful thinking and speaking.  The song goes on to say “We’re up against the wall” and this is good:

When they knock you down

You’re gonna get back on your feet

In the community where this tragedy took place, in the state of Connecticut, and in our country, we will be there for each other and we will get back on our feet!  And finally:

When they break your heart

When they cause your soul to mourn

Remember what I said

Boy you was battle born

This tragedy broke our hearts and we grieve for the little ones, teachers and principle and their families and the entire community.  We need to remember that we are battle born.  We will never stop loving one another, caring and reaching out.  We are strong and will never back down against the evil and injustice in this world!

Check out this song on Grooveshark or Spotify and listen along and see if it doesn’t make you want to get up and shine your light instead of cursing the darkness!

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Just keep swimming!

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I am having one of those days when my body does not want to cooperate with my mind.  Sometimes, despite my best efforts in my diet, I still experience inflammation.  Unfortunately, this does not mean that I can stop moving.  On days like today, I need to motivate myself and Dory from Finding Nemo is always there for me.  Remember when Dory and Marlin were descending into that deep pit in the ocean?  She started to sing “just keep swimming, just keep swimming”.  I used to keep a little plastic toy of Dory close by so I could be reminded to just keep swimming!  I also often have to remind myself that it is all right if I am slow because at least I am moving forward.

Maybe more of us need to be like Dory.  She was curious, joyful and full of life.  I find myself to be like Marlin, fearful of trying new things, a little uptight and sometimes needing someone like her to hold my hand as I swim down into the unknown.

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If I need a good laugh, I can listen to her try to communicate with whales.

thI think that many of us can identify with at least one character in a Pixar movie or any movie and sometimes that can motivate us to keep on trudging towards victory no matter how we may feel!  Is there a cartoon/Pixar/movie character that you can identify with?