#nmdunited

I have a neuro-muscular disability called Muscular Dystrophy.  It affects all the muscles in my body, making me the weakest of weak bois.  I can’t walk, lift my arms above my head, along with a whole host of other things we won’t get in to now.

Why does that matter?  Because today I woke up to a text from my brother with this image attached:

For those that don’t know, the MDA (Muscular Dystrophy Association) is an organization that funds research for a cure for the 30+ forms of MD, as well as fund summer camps and a few other things.  

Back in the day, up until 5-ish years ago, the MDA had a huge telethon every Labor Day weekend.  For more than 24 hours, celebrities would come and perform to raise money “for the kids”.  It would cut between the national telethon and the local chapter, where you could see locals who had MD talk and beg for money.

Here lies the issue both I and many other adults with MD have with the Telethon. The telethon exploits families, mostly with young kids, to make viewers feel bad for the poor children who aren’t normal. Like seriously, the way the telethon treats these stories you’d think all the kids die before their 18th birthday.  And when the telethons started in the ‘60′s, that was true.  The life expectancy for people with Duchenne’s, one of the most common forms, was not good.  But with advances in medicine, people with Duchenne’s, as well as many other types, can live long, happy, healthy lives.

Here’s the thing, though. MDA hasn’t updated their narrative.  Notice in the image above, this is a “kids telethon”.  And no, that’s not telling you about the kinds of entertainment they’ll most likely have--though it’s usually kid friendly anyway.  I know from experience, having a rarer form of MD (LAMA2, if you wanna know) that the MDA doesn’t care about me.  They don’t help with paying for medical equipment anymore.  Back in the day they used to have support groups, but most chapters have stopped those too.

There are so many better organizations to give your money to, to help both children and adults with muscular dystrophy live full, happy lives.  My personal favorite is NMDUnited, who is both founded and run by people with MD.  I know half the board, and they are all fantastic people who want to live as independently as possible.  Please, if you’re going to support either of these organizations, please support NMDUnited.

My ask box is open if you have any questions!  I might add on to this later idk

"Every life is made up of good and bad things.... The good things don’t always soften the bad, but equally, the bad things don’t have to spoil the good or make them unimportant." See Lucy's letter at http://goo.gl/wSFajg

"There will be difficulties, but everyone with life has hardships." Dayniah Manderson's words are so true for everyone. Read her insightful letter once more at http://goo.gl/PaKfkO

Dear Julianna,

My name is Evald and I have had muscular dystrophy ever since I was born. It’s called Spinal Muscular Dystrophy II. Actually, the doctors didn’t think I would live to be more than four years old. Now I’m 71 years old.

A long time ago, in 1971, I founded the Danish Muscular Dystrophy Association, and except for a period of three years, I have been the chairman since then. I have a daughter and two grandchildren around your age.

When I look at the pictures of you, I see a girl full of life and energy. In my humble opinion, it’s way too early to talk about when you should go to heaven. I can see that you are a smart girl, and I bet that you are a big inspiration to all your friends.

I have never been able to walk, but when my friends were running around or climbing trees, I used my imagination. It didn’t matter that I only sat on the ground, in my imagination I did all the same stuff as they did.

Until I got my respirator (that thing where the doctors put a tube in my neck for breathing – it’s awesome) I had pneumonia a lot. Now I haven’t had pneumonia for years, and I have a lot more energy.

One thing is for sure, we all have to go to heaven someday. You don’t have to go there just yet. It is possible to live for many years, to have many friends, and to have a good time with your brother and your parents.

Before you go to heaven, I think you should give it a try, and get a respirator. I think you’ll like it.

Maybe you have heard people say “life is what you make it”. I think that’s true, and I believe that you can make it awesome and sparkly.

If you and your parents are interested in learning more about life with a respirator, please ask them to connect with me on facebook.

Best regards,

Evald Krog

PS: Check out my shoes… I have them in pink too.

Dear Julianna,

My name is Kyann, and I am 23 years old. Like you, I have Charcot Marie Tooth. I am unable to walk, so I use a power wheelchair to get around. I also have many people who are here for me when I need help.

I understand that living with CMT can sometimes be tough. I know that having to stay in the hospital is never fun, and having trouble breathing can be scary. I really do not like when I am sick, and I do not like having surgery either. But, going through all those things means I get to spend another precious day here on earth.

When I was your age, it was hard to watch other kids doing things that I could not do. As I grew up, I learned that I could do so many things, maybe not in the same way or as fast as others, but I could still do almost anything I wanted to do.

I also learned that no one can do everything. God made us all special. Your life is precious, and you are alive for a reason.

One day, I believe I will go to Heaven too. But, until that time comes, I am going to enjoy the life God gave me. I love my life. I have been so blessed. I have amazing parents, who love and support me. I have a talented sister, who loves to bake, sing, is on the track team at the University she attends, and absolutely loves Disney. I have so many awesome friends, and a loving church family. I graduated from high school with honors and I went on to graduate from a four year university too! This means I went to school for 17 years, and I am so glad that I got to have that experience. I plan to achieve my master's as well, and to one day have my own business.

On top of going to school for a really long time, I have traveled to seven countries, half the states here in the US, as well as Washington D.C. I love to travel. I love to see all the different beautiful places that God made.

I know living with a disability can be hard, painful and scary at times, but all the joy that life brings is totally worth it. Life is so beautiful. You are beautiful. Please don't ever give up.

Kyann