Everyone that encounters my little brother Jacob, who is only five years old, sees a smart, loving,...
Everyone that encounters my little brother Jacob, who is only five years old, sees a smart, loving, energetic, healthy child. But on the inside, my little brother is severely struggling. His muscles are deteriorating at an alarming rate, because he has Duchenne Muscular Dystrophy (DMD).
By the time Jacob is a teenager he will lose his ability to walk, eventually losing all his muscle function in his body. Like all boys with this awful disease he will die from heart or respiratory failure in his late teens or early twenties.
One of the hardest things for me being his big sister is knowing that everything is going to be difficult for him growing up. He won’t be able to keep up with the other kids at school or even play sports the way little boys should be able to do. He has a hard enough time keeping up with my youngest brother, Nicholas. I just try to think of everything I can do for him with the small amount of time I have with this life limiting disease.
Right now the goal is to get Jacob the treatment needed and exhaust all options out there to finding a cure for Duchenne, or at least slow it down significantly, before it has a chance to take him from our lives.
Jacob was diagnosed late April 2012, a day my family and I will never forget, a blood test that changed everything. My family is now going through a process we never dreamed of going through. The more I learn about this deadly disease the more I want to make sure I do everything in my power to help Jacob and other little boys with this relentless genetic disease.
DMD is 100% fatal. There is no cure, no proven treatment and no survivors. I don’t want my brother growing up with a future like this; I can’t believe it nor accept it. I can only hope, pray and believe that a cure, or even treatment to delay the progression, will be found soon.
I want my brother to have a future. I want to help him get his driver license, attend graduation and pick his future girlfriends apart. I want to be able to attend his wedding and watch him grow a family. I want a future for him…and with him.
Sarah Burgess-Bembnowski, Jacob’s big sister.
Posted on May 14, 2012 at 7:52 pm | View/Post Comments
My name is Melody Burgess, and I want to tell you aboutDuchenne Muscular Dystrophy. My Son Jacob was...
My name is Melody Burgess, and I want to tell you aboutDuchenne Muscular Dystrophy. My Son Jacob was diagnosed with this terribledisease a few weeks ago. We noticed he was having a hard time going upsteps and he tripped a lot, but we didn’t think too much of it at first. We decided to take him to the doctors and were not at all ready for all thedoctor appointments and blood tests Jacob was to endure.
When I first heard them say “Muscular Dystrophy,” I was indisbelief and knew very little about this disease. I studied up on this andcouldn’t believe what I was reading. This is a very progressive disease thataffects all of your muscles, but we have decided to take a strong stand againstthis horrible disease and do whatever we need to do for Jacob. We live inTennessee and have been toVanderbilt Children’s Hospital and Pittsburgh Children’s Hospital, and we arenow going to Corpus Christi, Texasfor a treatment called Vecttor, which is having promising results with littleboys who have DMD.
I can’t begin to tell you how this is affecting our family.My husband and I will be married 31 years this year, and we were blessed with 5beautiful children. I believe we were meant to be together and God helped usfind each other. And I believe our marriage is the strongest it has ever been,but I could have never imagined what was coming our way. Our hearts arebreaking with what this DMD can cause our son. I guess I’m still in denial,but God gives us Strength.
So, I am asking for all the prayers you can send my son’sway that a cure will be found, and please read up on Duchenne MuscularDystrophy—it affects 1 out of 3500 boys. Please pray for us on June 5ththat this Vecttor treatment will help Jacob. Thank You and God Bless.
Posted on May 14, 2012 at 7:48 pm | View/Post Comments
My new single “Sassy” is now on iTunes! Click here...
My new single “Sassy” is now on iTunes!
Click here to download “Sassy” on iTunes.
Also, don’t forget to check out the video on YouTube: http://youtu.be/Z08JNkHwIRM
Posted on January 17, 2012 at 1:34 am | View/Post Comments
Happy New Year, everyone!! Let’s start 2012 off right with...
Happy New Year, everyone!! Let’s start 2012 off right with the release of my European single “Sassy”…..Ich liebe euch meine Schweizer Freunde!!!
Sarah Burgess - Sassy (YouTube Edition) (by IcebergMusicGroup)
Posted on January 8, 2012 at 2:33 am | View/Post Comments
Lately I’ve been feeling a little down in the “friend” department…but this...
Lately I’ve been feeling a little down in the “friend” department…but this new year has already brought some great new things, as well as new people into my life. If that isn’t enough, I had my friend send me this song/poem she wrote for me, just out of the blue. It’s gestures like these that give me so much hope in people and just in this new year itself. Already It’s turning out great :)….
Thanks Miss Savannah! I appreciate this beyond words….especially that you would take the time to write this for me.
Sometimes I lay awake and wonder why does this happen to me.
I try to understand why you don’t care
Or are you just too blind to see
Popularity isn’t as important as it may seem
Why do you get pleasure from trying to kill my dream?
You will never know, I’m quickly letting go
My life is hell, and there’s noone I can tell
Say what you want, try to tear me down
I’ll tell you now one day you’ll all come around
I’m a girl with a beating heart inside
The true friend you’ll never know
What you say cuts so deep compassion was something you didn’t show
A small girl who could dream so big was such an easy target
The terror I saw you were the culprit
You will never know, I’m quickly letting go
My life is hell, and there’s noone I can tell
Say what you want try to tear me down
I’ll tell you now one day you’ll come around
I’m rising to the top
You regret what you used to say
I know I make you envious
Because after all you helped me get this way
I used to look in the mirror
The girl who looked back was desolate and gloomy
But now thanks to you
The woman who looks back radiates with so much beauty
You never knew, I let go a long time ago
You put me through hell, but I stood strong and never fell
I was always stuck in the background
But I told you one day you’ll all come around
I’m standing on stage, it’s time to check my sound
I look out across the sold out crowd
You finally came around, now you’re the one standing in the background
Posted on January 8, 2012 at 2:29 am | View/Post Comments
Follow me on Twitter! :)
Posted on January 8, 2012 at 2:16 am | View/Post Comments
Click to listen: Sassy by Sarah Burgess New European single to...
Click to listen: Sassy by Sarah Burgess
New European single to be released January 16th! :) Hope you all enjoy!
Posted on January 8, 2012 at 2:11 am | View/Post Comments
"You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds..."
“You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of just embarrassing bravery. And I promise you, something great will come of it”
- Benjamin Mee
Posted on December 30, 2011 at 6:12 am | View/Post Comments
Words to live by
Last night we ended our long, exhausting day at the movies. We’ve wanted to see “We bought a Zoo” ever since we seen the previews. I knew it was was going to be good, but the movie was definitely a big highlight of the year. Possibly even my favorite film of the year. The best part was that it was TRUE, ugh, bring your tissues to the theater because my mascara was everywhere, my lashes were even falling off! Hell, even the boys got teary eyed.
I really loved the quotes and lessons taught as well, and think they are words to live by for anyone.
“You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of just embarrassing bravery. And I promise you, something great will come of it”
“WHY NOT.”
Please just see it for yourself, I’m a big movie spoiler so I don’t want to give anymore away! You will not be disappointed.
Posted on December 30, 2011 at 6:10 am | View/Post Comments
For Dinner we went to, Dick’s Last Resort. It was super...
His face is priceless!
I KNEW it was gonna be about the hair!
For Dinner we went to, Dick’s Last Resort. It was super hilarious. I knew I was setting myself up for so much, but I was ready! I would recommend it if you’re looking to have a good time, but the food was expensive and portions were tiny…Also it wasn’t very relaxing lol!! I got a funny hat and so did Mark…his said something about his poor balding head! Emily’s I was a little disappointed with, but whatever…it was just a little too vulgar for her, but at least she liked it ;). Joshua’s was definitely the best because the joke went even further for us…on Christmas we got him a Justin Bieber bear and wrapping paper!
So if you’re looking for a good laugh I would check it out! www.Dickslastresort.com
Just don’t take young kids there please! ;)
Posted on December 30, 2011 at 6:01 am | View/Post Comments
Photo
Our hands HURT!!!
Haha I didn't want to drop Mark LOL!
Posted on December 30, 2011 at 5:54 am | View/Post Comments
We went indoor rock climbing yesterday, and I fully recommend it...
We went indoor rock climbing yesterday, and I fully recommend it to anyone. We had an absolute blast and actually climbed for four hours!! Afterwards we were exhausted and our limbs felt like jelly! It was definitely confident building; you have everyone cheering you on, and feel like you can accomplish anything after climbing some of these tough walls! My brother Joshua was hilarious…he was like a little spider monkey scaling some of these walls. Emily did really well too! She climbed a really tough wall that was hard for Mark to climb!
Mark and I also took a belay lesson there, so we were able to control the climber’s ropes…so make sure if you go to get a lessons because it gives you so much freedom.
Check it out www.ClimbNashville.com
Posted on December 30, 2011 at 5:52 am | View/Post Comments
My Dad made us go get family photos done at Olan Mills the other...
My Dad made us go get family photos done at Olan Mills the other day. I tried to explain how awful of an idea it was…bring it was Olan Mills, but my once my Dad has his mind set….it’s set! Anyways, the entire appointment was hilarious and at one point my Dad was on the floor with all of us “crouching” above him. I swear it was a photo to be sent to “Awkward family photos” hahahaha!
I had no say in the “choosing” of the photo, so my Dad choose the most normal looking shot. Normal in the sense the I look constipated, but no awkward poses none the less. Mark and I are still thinking about going to get that photo…it’s just toooo priceless to waste ;)
Enjoy your famileis folks…they are all you got.
Posted on December 30, 2011 at 5:34 am | View/Post Comments
