A little over a year ago I wrote a song for my brother, Jacob. The song is being donated 100% to CureDuchnne.org in hopes of raising much needed research money and awareness. There were so many bumps and issues along the way, that resulted in pushing back the release date. I would get a little discouraged at times, but there were so many people to build me up and give me my positivity back. Today is the day we are finally releasing my song, “Run Away”. The way I see it, it’s being released at the perfect time. The Duchenne community needs a “pick me up”, we cannot let the recent news of the past year get us down. We need to all stand together and be positive and just know things will work out…just like the release of this song. I know in my heart a cure is around the corner, but it’s going to be one heck of a fight to get there. I ask you to please pass this along to everyone you know and to repost, repost, repost ! I want a cure for ALL boys with Duchenne…more than anything in the entire universe.
Thank you so much to everyone who has had an impact in my life, this past year. I cannot ever tell you how much you all have made me stronger. The strength that I have today, now empowers me to fight for my brother, my friends and ALL boys. I will not stop until we all are able to one day, run far, far away from Duchenne Muscular Dystropy. Please go to www.TheRunAwayProject.org to see how many people were involved, it’s absolutely amazing
Enjoy the video and please REPOST. Help CureDuchenne.org and please help our boys.
Together, We Can Cure Duchenne. Together, We Will Run Away.
Yesterday I 100% believe that there is a Santa Claus, and I had the honor to meet him. Here’s my story of hope yesterday….
My husband and I took our good friend, Billy out for a day of fun. Billy is an amazing young man who is one of the lucky few to be in the Sarepta clinical trial. Sarepta makes a drug called Eteplirsen, which replaces missing dystrophin in the muscles, essentially making the muscles stronger. Duchenne has already affected my brother’s back muscles, legs and strength, he is only 7. While I see my brother not improving, I see Billy, who is on the drug, getting stronger with age and time. This is something that is unheard of in the Duchenne community. Recently the FDA did a complete 180 on Sarepta, calling their drug premature, and if they stick with this decision, it sets everything back for an amount of time we just don’t have to waste. Duchenne moves way too quickly and wasting precious time, is just not okay with me, especially when everyone has seen the improvements the drug makes. Billy spent a twelve hour day with us, and that’s hard enough for a child with normal muscle function, Billy was still, after twelve long hours, going strong rolling on the ground, dancing and crawling in and out of a fort of sheets. This is something so
many believe in, and it is so disheartening that there might be a chance that they will stick with their decision. It has put a wedge into the Duchenne community, which to me, has always seemed so strong. Placing blame gets us absolutely no where, when we
should be locking hands, keeping positive and doing our absolute best to convince the FDA that Eteplirsen is needed. This is the time to fight together, not against.
Feeling not myself lately, I was looking forward to a day out with Billy. The first thing I had planned was a visit with
Good old Santa Claus. After
Santa took his time talking with Billy, it was MY turn. I asked Santa for the unaskable. I told him that I never, ever wanted anything else for he rest of my life, I just wanted a cure for Duchenne. He looked
in my eyes with all the compassion in the world, and he said, ” I am so sorry about the recent news, but don’t lose hope because so many good things are happening and a cure is so close.” Chills ran up my entire body and I couldn’t look Santa in the eye anymore in fear I would cry, and I always must be the strong one. I feel like it was a message from God saying, even though you might not understand what’s happening, keep trusting me. Santa gave me a little gift early yesterday, the gift of staying strong, keeping faith rock solid and to always keep the positivity flowing, he also left me with words of promised prayers every night. How could this man playing Santa, know all of this?? How??
What do I know?
I absolutely believe in Santa Claus.
A cure IS coming.
What is “The Run Away Project”?
It all started with one person’s idea and how it transformed and was brought to life with around 50 (and counting…!) amazing people. Here’s how it all began:
I was asked over a year ago if I was interested in writing a song for CureDuchenne.Org and I was beyond thrilled and honored to be asked. CureDuchenne is national nonprofit, that raises awareness and funds, to find a cure for Duchenne Muscular Dystrophy. The funds that are raised, go to support the most promising research programs aimed at treating and curing the disease. For the first time ever, there is hope to find a cure for this destructive disease affecting thousands of boys and their families, including mine. (More info: www.CureDuchenne.org)
I was more than willing to latch my heart and soul on this project because it is something that is currently affecting my family.18 months ago, my 6 year old brother, Jacob was diagnosed with Duchenne. It hit my entire family pretty hard, and at the time, we knew NOTHING about the disease. Googling “Duchenne Muscular Dystrophy” was a pretty scary thing, especially since there isn’t a cure yet. It was also pretty shocking because it is very common, 1 out of 3,500 boys will be diagnosed with DMD, most won’t survive past their mid twenties. My little brothers are my absolute joy in life, and as a big sister, I refuse to accept this, and will stop at nothing to help my brother and all other boys with DMD, in any way I can.
When I first sat down down to write, it was such a horrible experience. All of my words felt negative, hopeless and weak. I knew in my heart to gain awareness, you have to uplift the spirit. Months and months went by and suddenly I woke up and I knew it was time to write. Inspiration, hope and positivity was on full throttle. In one week “Run Away” was written, recorded and produced. I decided on the words “Run Away”, for a few reasons. One being this is something that a child with Duchenne cannot do. I can imagine every parent wants to see their child play and run without trouble. Another reason is that I feel as if we need to start mentally “running” away from all the negativity the disease brings and “running” towards the cure, together, making each other brave.
The hard part was over, right?? WRONG!!
We have encountered a number of “hills” along the way, but somehow the cards are always in our favor and we make it over the hill, even if it wasn’t as easy as planned. I feel like this is the same battle with finding a cure for Duchenne.
A few weeks later, I contacted a bunch of people about filming a video for the song. The time, effort and work that was put into the video (And still is…) is absolutely humbling. Wardrobe, make-up, photos, lighting, camera work, props,editing…so much goes into one tiny idea, a tiny idea that grows by the day. Soon we will be posting the behind the scenes video…and Release the official “Run Away” music video in September.
Right now, CureDuchenne, myself and sooo, sooo many others have put so much work into making sure “Run Away” will have the best chance possible at success. Our goal is to raise awareness and money, so we can find that cure for ALL boys with Duchenne Muscualr Dystrophy. 100% of ALL money made from “Run Away” will be donated to CureDuchenne.
There is still a lot of work to be done in the next few weeks leading up to the release, but the team I have involved is incredible. Once everything is released, I will have a GINORMOUS page dedicated to “The Run Away Project Team”, because it is honestly so amazing to see everyone’s hand print on helping find a Cure for Duchenne. You’ll be able to see what part they played and how we couldn’t have done it without them.
If you can help in away with press, pr, media or anythings else please don’t hesitate to contact me. There is no act too small.
Or you can donate directly to the organization: www.CureDuchenne.Org
Together, we can cure Duchenne. Together, we will Run Away.
My awesome little bro, Jacob :)
When I was home, I would “hook” my brother up to his Vecctor Machine. (When I say, hooking up, it means we’re attaching the electrodes to certain parts of hi…
When I was home, I would “hook” my brother up to his Vecctor Machine. (When I say, hooking up, it means we’re attaching the electrodes to certain parts of his body.)This machine helps increase blood flow and helps his muscles become stronger. It’s a very tedious task, especially for a 6 year old, like Jacob. He gets two treatments a day (Morning, evening) and each treatment lasts 1.5 hours. Ever since my parents decided to use the Vecctor, which was over a year ago, he has not missed a single treatment. When getting “hooked up”, Jacob has to sit very still, he cannot eat or drink and can’t touch any electronics. That is almost an impossible task, but Jacob is such a trooper, and is always smiling. One day when I was preparing the machine, Jacob asked me, “Will I have to get hooked up in heaven?”
I was so shocked and stunned that he was already thinking about heaven and what heaven would be like. He was imagining his life without having to miss playtime to get attached to a machine. It amazed me that he was already having these deep thoughts. I turned on my cell phone and started to record on my lap to see if he would repeat it again for me….and he did. When watching this, the purity, love and joy that surrounds my little bro, is amazing. He even proceeds to talk about never sleeping, no bedtime and always playtime. Make sure you listen to the little “Yayyy” at the end of the video.
I wasn’t going to post this, but I wanted to show everyone how awesome Jacob is, even when he is going through things an adult couldn’t even imagine. Instead of complaining, let’s just be glad that when we get to heaven we won’t have to be “Hooked Up” and attached to our troubles either.
I’ve had such a great day, so many positive things were coming at me all at once. I was starting to feel a little overwhelmed and stressed about some things, but I felt like God sent me what I needed today….a bunch of little bursts of happiness.
Things are moving along really well with the release of “Run Away” (The song for CureDuchenne.org). So many people are involved with the song and video, even if it’s in the littlest way, they still are a part of it. The excitement around the entire project is absolutely humbling to me. I can’t seem to thank people enough, especially when they are coming up with ideas for the project. I am so lucky to have met some amazing people!
I also got a very unexpected phone call today from one of the boys from camp!!! My little buddy aka my “bro”, Kayden! I almost burst into tears from so much excitement, I also got to talk to his Grandma and little sister. I am so happy to learn a little more about him…even more happy that his Grandma said I could visit the next time I’m in Nashville!
(Me and Kayden swimming at MDA camp 2013)
Tonight I also had a church dinner to go to, it was just for the women and I had signed up weeks in advance. It was a pretty hectic day and I almost didn’t go because of all the things I had to do and was in the middle of. I forced myself to stop working on things and go….they were counting on me for the strawberries and pineapple! I’m really glad I went because it was pretty great to really “talk” to some of the ladies and get to know them outside of regular church. I didn’t know some of the amazing stories these women have been through, and the positivity they always portray. Again very humbling, and a great reminder to me keep my head held high. My bible verse of course was: Philippians 4:13 I can do everything through him who gives me strength.
The wisdom of positive thinking. Coincidence? I think not! :)
So much other great stuff happened today, but I’ll save those stories for a rainy day ;). I’ll just end this entry with my little five yr old brother, Knick Knack thought his new school shirt “gangman style” was an Obama shirt….and he was NOT wearing it! Hahahaha!
(This is the “Obama” shirt hahahaha!!!)
It’s has been a minute since I last updated everyone with a blog. It’s to the point where it’s almost an overwhelming load of information, stories and adorable photos. It’s my own fault, but I also curse the Earth for only providing me with 24 hours to budget my time. Haha!
I last left off at MDA camp. I cannot tell you guys how inspiring and amazing that was. I met so many great kids. I actually still have contact with three of the boys that were in the same den as me and Jacob. I will always think of them as my little bro’s, because I see so much of my brother’s in them. They also need a really old sister like me to watch out for them. (And yes, I said old, I had my 26th birthday while I was MIA on my blog.)
I also keep in contact with my very beautiful new sister and BFF, Lena that I met at camp. I wasn’t her counselor, but we instantly became friends and we found out that we had so much in common! We would talk whenever we could, she sings, loves make-up, clothes, but mainly she sings, and she sings AWESOME! Lena is a very strong and amazing young lady. She has been through some of the toughest situations that a person should never have to face, let alone a 15 yr old. I would have never of known any of this, but she decided to tell me. Lena has this smile that light up an entire room and is so positive & happy. She is so inspiring to me, it reminds me to not sweat the little stuff. My eyes were opened a little more, all thanks to a 15 yr old. :)
I became so close to my boys at camp, so the last day was very hard. I held my tears until after I said our goodbyes. One of the boys said to me, “Let’s close our eyes and pretend we’re going to your house.” I needed to get out of there fast or I was going to be a crying mess. I’m writing to everyone until I go back down to Nashville, then hopefully I can visit if schedules allow!
Jacob and I cannot wait for MDA summer camp 2014! I’ll be signing up to do the Nashville MDA summer camp again. I’m also going to sign up to do Pittsburgh and Cleveland MDA camp, I cannot tell you how awesome these kids are.
Kaleb, Me, Kayden and Jacob all sitting on my lap waiting for Messy Games to start. (Yes, we DID get messier!) Haha, Jacob’s expressiveness always makes me giggle!
Last day of camp :(. I love this photo so much, we were all together in a photo. I miss my bro’s! Jacob, Austin, Kaleb and Kayden.
These boys have a smile on their face everyday, even when facing stuff that is difficult. I learned from them, to keep smiling through the good AND the bad. Even though I don’t understand why bad stuff must happen and seems to just pops in our lives, I can smile knowing that God does and he has a plan…a bigger one.
For more information about Duchenne or MDA summer camp:
A very small selection of photos of Jacob from MDA camp. Jacob’s face is always so expressive! Together, we can Cure Duchenne.
Today I am volunteering for a week to be a camp counselor at MDA summer camp. For those of you who don’t know, my six year old brother (Jacob), was diagnosed with Duchenne Muscular Dystrophy. I get to be his camp counselor too! This will be a NEW experience for us both, but I think it will be a great bonding time. I can’t wait to meet the other kids and learn more about the disease and how to help my brother in the future.
Please send all prayers and positive vibes our way!
Hope. Love. MDA.
Hello :) my name is Sarah Burgess. I'm a full time singer/songwriter. I do a bunch of other stuff in between, I'm here, I'm real, I'm just me.