When Jackson was newly diagnosed with Autism, I found this Welcome to Holland poem written by Emily Perl Kingsley.

Now with his Duchenne Muscular Dystrophy Diagnosis I have so much more love for these beautiful words.

I immediately fell in love with it and put it right in my journal.

There is not a time when I read it and don’t shed tears.

I believe it captures a lot of the emotions I have felt.

Pat Furlong is the founding president and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne Muscular Dystrophy.

When doctors diagnosed her 2 sons with Duchenne in 1984, Pat immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care.

In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure.

Today, she continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.

Here is a video that tells a little more about her and her story:

http://youtu.be/9U28QPHIA34

The Theater of Duchenne

This is us. 

We are confronted with a “to do” list that extends to the moon and back, 

appropriate for the size of the gene responsible for the word Duchenne,

 which has recently broken down the door of home and heart.

 We have to learn how to say the word DUCHENNE out loud without letting on that our heart is breaking in a million pieces. 

We have to say it to the world we live in, 

our spouse, 

our children,

 our extended family,

 the school, 

and our community. 

We have to search for our own version of optimal care,

 a team of physicians we feel confident have sufficient expertise and experience to care for our sons. We search the internet and connect with the Duchenne Community.

-Pat Furlong

I’m writing all about Pat Furlong today because back in 2012, I had the opportunity to attend a Duchenne Support Group Meeting and she was there.

We were only 4 months into Jackson’s diagnosis.

So, I went to this support group……and I didn’t know what to expect.

I didn’t know if I could keep my emotions in check, but i went anyway.

and i brought my “Keep calm and carry on” tissues.

The meeting was going great and we had to go around the room and do our little introductions.

I talked about our recent diagnosis and they asked me all the steps we’ve taken thus far and I discussed all the places we’ve been and all the clinics we’ve traveled to and what decisions we’ve made for Jackson’s care.

The person leading the support group was Pat Furlong, the lady I wrote all about up above.

See, I was so new to the Duchenne Community that I didn’t know who she was.

All i knew from the night before the meeting was her story about her 2 sons because I had read about it in a book and I was sobbing the night before when I read her story.

During my into I also told her how much it meant to me to be able to meet her and share our stories and how I just crumbled upon reading hers.

and of course that is when i lost it and couldn’t keep the tears away.

Because she then told her story and it was so tender and so heartbreaking at the same time.

No one else was really emotional, but don’t worry,

because I was plenty emotional for everyone else.

I was SO nervous before the meeting.

My stomach was in knots and I didn’t eat anything for fear that it would come back up.

After my intro I felt much better and remained calm throughout the entire thing.

No more crying for me,

and let me tell you why.

There was another couple there and their son is 5 years old and has Duchenne and they haven’t really taken the course that a lot of us other families have with their son.

In fact, they haven’t really done anything.

So as I’m going on and on about what we’re doing, they were getting more and more confused and upset.

So then the conversation turns to me because they looked at me and started questioning me and the reasons I’m doing those things.

They disagree with my decisions and feel it is not the best choice.

It was such a weird feeling to be in for me because

this was all SO new to me and as I sat there

I realized that this was the first time {in regards to DMD} that I had to stand up and back the choices that I was making.

I had to inform these parents of why it is the best choice and what the research shows,

and why we’re traveling all around instead of staying local for treatment.

I didn’t know I had it in me so early on to have such an intense discussion, but I have to say that I feel like I did a great job presenting my reasoning and I only hope that they will use the information to find some help for their son.

and I had no hard feelings towards them, even though that would have been quite easy to have, because i understood that it was coming from a place of defensiveness.

Defensiveness because they felt guilty that their son has had a diagnosis for a 1year+ and we were a few weeks into diagnosis and they had done nothing.

So I educated them and I hope they apply my favorite quote to their lives.

“When you know better, you do better”.

-Maya Angelou

The meeting ran WAY over, but it was great.

and i’m really glad that i went.

and i got END DUCHENNE t-shirts for our family,

and i got to meet Pat Furlong and learn from her,

and now I’m ready for the second meeting which is in a few weeks.

To view Jackson’s Personal Donation Page through Parent Project MD click HERE.

I know this sounds crazy, but I’ve read about this about a year ago and I’ve NEVER stopped thinking about it.

Scientists are researching a protein in the Chilean Rose Tarantula’s venom that might hault the progression of Duchenne Muscular Dystrophy.

Here is the article to read:

I have a really, really strange theory…and it came over me when I FIRST read this article which was just a short headline probably 6-12 months ago. I thought….that’s so crazy!  And then I thought about it for a while longer. and I had this crazy thought pop into my head.

What if…..and this is a HUGE what if….

What if GOD made it so that of the millions and millions of animals and plants, etc that are on the Earth are all here for a specific purpose and something as crazy as spider venom will help to cure something like Muscular Dystrophy. and what if all the cures to life’s most horrible and tragic diseases lies in our ability as humans and scientists to figure that out. What is other animal proteins or plant proteins, could be the answer to many other illnesses.

I know, crazy right?!

Well, it was just a thought that popped into my head and when I saw this article out today, it made me think of it all over again.

I really don’t think it’s the strangest thing….maybe, just maybe.

So, I guess that means that I better get over my HUGE fear of spiders now….right?!

Original Article HERE.