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.

Book Adventures

Since it’s a cool, rainy Saturday, I thought it would be fitting to post about books.  I am at the end of I am Number Four by Pittacus Lore.  Even though I left my teenage years behind over 20 years ago, I still enjoy reading teen fiction.   Many fun, adventurous series have been released since Harry Potter.  I remember many different series I read when I was in school and I thought it would be fun to write about them.

One of the first series I remember reading is Little House on the Prairie by Laura Ingalls Wilder.  A friend recommended them to me and I quickly became hooked.  So hooked that my mother became upset with me for staying in my room so much in my pajamas.

Another series I started reading a short time later was Sweet Valley High by Francine Pascal.  Remember that series?  The twin blonde sisters?  I read quite a few of them as I longed for high school, hoping I could be half as beautiful as the Wakefield sisters.  I pictured myself with trendy clothes, thick, wavy hair and beautiful boyfriends.

The funnest series I read was the Choose Your Own Adventure series (various authors).  We did not have interactive games that are common today, so these books were a breakthrough in my preteen years.  It was great fun to make choices during the story, like being in the character’s shoes, and turning to a certain page from there to see the outcome.  Many times my decision would lead me to another page to make another choice, ultimately leading me to a happy ending.  Other times I would meet my sudden fate.

It amazes me when I compare these books I grew up with to the teen fiction series I shared with my sons.  I will be revisiting the latter in future posts.  I just love books!  What series did you read when you were growing up? Thanks for reading my blog and I would love to hear from you!