Co-Sponsor the MD CARE Act
In Tennessee, there lives a family – my family – who is dealing with the many challenges Duchenne muscular dystrophy causes my 7-year-old brother, Jacob.
Jacob is a thrill seeker of many sorts. He likes to slide down from the tallest slide, but to get there, my 14-year-old brother, Joshua, has to carry him. He likes to ride his tricycle, but his legs aren’t strong enough to make the pedals go – not to worry, his little brother, Nicholas, is pushing him from behind. When there is a race at school, instead of Jacob feeling left out again, I ran with him on my back and, together, we won… That was Jacob’s first time winning a race. Jacob also loves to ride the fastest, craziest, loopiest roller coasters, but to do that, I or my parents must wrap our arms around Jacob and hold him with all of our might, simply because he isn’t strong enough to support his own weight on those rides.
My family sacrifices so much to help my brother, and we wouldn’t have it any other way. My mom sacrifices sleep in order to take care of all of my siblings, my paraplegic diabetic grandfather, her many clients at work, my brother’s treatment, and occasionally ironing my dad’s work clothes. She hooks my brother up to a machine three hours every day, just to promote more blood flow and to lessen his muscle pain. Personally, I have dedicated my life to simply saving my brother’s, and I cannot accept the fact that I might lose him at such a young age. The MD CARE Act has lengthened the lifespan of an average patient, and we have more hope than ever that stabilization drugs and a cure are in our future, especially with nearly 20 potential therapies in clinical trials and several others in developmental stages.
I want Jacob – and all other boys with Duchenne – to enjoy the thrills and simple pleasures of life, such as slides, bicycles, running, and roller coasters. The MD CARE Act could allow more research, better care, and quicker therapies. I am asking you, on behalf of Jacob and my family, and as a big sister, to please co-sponsor the MD CARE Act.
Almost two years ago my brother Jacob was diagnosed with Duchenne. It’s the most common, most fatal progressive muscle-wasting disease in children. Currently there is not a cure for this taker of young lives or even drugs to stabilize their muscles. Some parents have even wished cancer upon their child, because at least there would be a chance.
At first I didn’t believe in his diagnosis, I thought they must have gotten it wrong. When I saw Jacob with my own eyes start to deteriorate, I knew that this was our reality and something needed to be done about it. I couldn’t just continue down the road I was on, worrying about the stuff that simply didn’t matter.
I now use all of my God-given talents to help my brother Jacob and ALL other boys with Duchenne. In December, I released a song called “Run Away” that I wrote for Jacob and for ALL boys inflicted with this disease. I donated the song in its entirety to CureDuchenne.org to raise awareness and funds for research. Getting to know the founder of CureDuchenne, I discovered she was a Christian. I knew how deep her faith ran by the essay her son, Hawken, wrote when he was in 8th grade. Hawken, like my brother, has Duchenne.
This I Believe: Purpose Through God
I believe in a God who gives everyone the opportunity to live out his or her purpose in life – whether to provide the less fortunate with opportunities, or to spread the messages in the Bible, so everyone may have the opportunity to know God. It may seem that not everyone has these opportunities, but he or she eventually has a time in life when they expose themselves to God. No matter what problem I have, I will have the opportunity to know in the future that because of my faith in God, I will have eternal life in heaven. Life cannot be used for the sole purpose of making money and having the most fun on earth you can have. I believe that life should be lived out for a reason: to help other people or to do whatever God has intended for me to do with the many blessings every day brings. This thinking has helped me live through the problems I face each day.
I have not lost my father or mother in life, but instead I have been diagnosed with a rare muscle disease. God has given me solace when I do not know which direction to go, when I do not know what to do in life, and when it seems like I have nothing to live for. He has shown me that no matter what my problems are on this Earth, coping with them for the relatively short time we have, and spreading the news of the Lord, is much better than feeling bad for myself and doing nothing with my opportunities to spread the word and do the most good under Him.
Other people are stronger, more good-looking, and better off than I am. This notion does not faze me one bit because however I stand in life doesn’t matter unless I have a purpose to fulfill and have faith that God will provide. Many people try to make as much money as possible and have as much wealth as possible because it will make them happy for the rest of their life. I never want my sole purpose in life to have money for happiness, because when I am doing good for others the happiness never stops. Just because I am hampered though my physical ability, [it] does not mean my ability for caring for others stops and my embrace for doing good stops. When I start to feel bad for myself, I must count my blessings every day and know that contributing to my purpose in life will bring much more happiness to me than obsessing over how other people are better off than I am. If I start to think about it, it seems as though this disease is a blessing that humbles me and helps me turn my problems and myself to God.
By: Hawken Miller
When I read this essay written by this young man, wise beyond his years, I’m embarrassed because it’s hard for me to see the blessing in this devastating disease, because wouldn’t that be selfish? Wouldn’t that be terrible?
I wonder all the time why it took a tragedy for me to wake up and realize what life is truly about and how God is truly always, always there. Joshua 1:9 states, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
I have put my trust in God, and even though I have no idea why this was put into our lives, I know we are not to be discouraged; we are not to fear; we are to just TRUST Him. Since December, I dedicated my life to saving my brother’s. I have spoken in front of the FDA, ran a half marathon without training, rode my bike 50 miles without training, attended numerous events, started countless advocacy campaigns, and just recently met and spoke with congressmen about the MD CARE Act and accelerated drug approval. I live and breathe Duchenne, and I can’t say I don’t get discouraged or live in fear, but I know God is always giving me what I need in the form of a new Christian friend or a bible verse placed too perfectly to be ignored. This, I believe, is the purpose through God.
Not taking things personally, especially by someone close to you is much easier said than done. Over time your skin will grow thicker and thicker and you will be surprised how easy it becomes, almost too easy. Do not let anyone tell you who you are, what you are and what you are defined by, there is no possible way for anyone other than God to know the true answer to this. People hate feeling inadequate and wish they were able to do the things you yourself are able to do…or just hate the fact that you are not them, in any way shape or form. The pain will go away, and it will be quicker and quicker every time it happens…get up off your butt and brush yourself off, because you do not need their approval, especially when you’re the only human being on this planet that knows your heart.
Please watch this video I made for Duchenne Awareness…If you weren’t able to go to Disney for the Run for our Sons/Brothers Marathon weekend, or keep up with my posts, you can get an idea of what it was like in this video. I even took my GoPro on the run…Please share and help teach others about Duchenne Muscular Dystrophy.
I wanted to let you know that your big sister loves you very much!!! Today at 2:30am I got up to get ready to run today in your honor. You’re my special little brother and I would do ANYTHING for you. When you were diagnosed with Duchenne Muscular Dystrophy, I was in denial and I didn’t believe it was real. How could such a perfect kid, have not so perfect muscles? Don’t worry, you’re big sister will always love, fight
And protect you. Today I am racing to WRECK Duchenne, for you and for ALL boys with Duchenne. Im dressed as Vanellope from “Wreck it
Ralph”…because anyone who knows you, knows your favorite things are video games and Disney World! I know we’re racing against the clock, but I promise to never, ever stop until Duchenne is FINALLY wrecked! I love you soooo much buddy!!! You and
so many other boys will be in my heart today.
Your BIG sister
Sarah Burgess on WKBN talks about her new song “Run Away” and Duchenne.
Former American Idol contestant Sarah Burgess of East Palestine is hoping to find a cure for Duchenne’s Muscular Dystrophy, which her 7-year-old brother has.
The Duchenne community is the closest it’s ever been to finally putting an end to Duchenne, once and for all!
Please support PPMD and join us in the fight! I appreciate everything, everyone has done, please help me reach my goal of $$$ to be donated. Help me, my family and ALL boys with Duchenne by giving a donation today. Don’t be afraid of any amount being to small…every cent is a step closer to a cure.
I appreciate everyone of you. Thank you for your help
Here’s how to donate:
My friend Melissa posted this on my wall and wrote this little note to go along with it…Sometimes all you need is words like these to turn your day around. I can’t thank you enough Melissa!
Here is Melissa’s post:
I was thinking about you this morning, I have a brother who it’s 11 years younger than me so I get the whole maternal feeling you probably have for him. But your love, efforts, passion and determination to help your little brother and kiddos like my son leave me in awe of you. Your heart is pure and so very kind. I’m very lucky to call you a friend and have you in our corner. Thank you I guess is all I’m trying to say. Huge hugs, love, and HOPE!!
I hope everyone has a very Merry Christmas and enjoys time tomorrow with family, I know we will!! Please find it in your hearts to help me raise money towards finding a cure for Duchenne, the disease my brother has. I only need $230 more until I reach my goal Be a part of helping find a cure for ALL boys with Duchenne, my family appreciates ALL the help and encouragement received so far…especially me. Merry Christmas!!!!
Go here to donate:http://www.parentprojectmd.org/site/TR/Events/RunforourSons2010Design?px=1548783&pg=personal&fr_id=2860
Looking at my phone, I realized 2 hours had past since I first entered the line to see Santa Claus.Beside me was my very good friend Tyler, who by the way, had zero interest in Santa…he’s a very awesome, kind AND patient friend!! I also happened to be the last one to see Santa for the day, I even got an actual “golden ticket” for my place marker. I was very excited to conclude the day with Santa, because I wanted to give HIM a gift of gratitude, and I didn’t want to feel rushed. I was already receiving a few eye rolls and long stares from annoyed parents, obviously because I’m not a child and I’m waiting in line for Santa. If those few annoyed parents knew why I was there, attitudes would have been much different I think. My mood and spirit was at an extreme high and nothing was going to get me down, and…it was MY TURN! Sitting on Santa’s lap and handing him a big snazzy envelope, he opened it and began to read my laminated speech from the “FDA - Duchenne Policy Forum” on December 12. Instead of tears filling my eyes, tears filled Santa’s. I wanted to make sure Santa knew how appreciated his words were, and how it changed my day for the better.
I really DO believe a cure is coming swiftly for Duchenne.
In case you missed it, here is my first encounter with Santa: http://sarahburgessmusic.tumblr.com/post/67254126863/yesterday-i-100-believe-that-there-is-a-santa
Here is the live video feed of my speech, from the Duchenne - Policy Forum Meeting. Myself and along with 1 others were able to read these in front of the FDA, urging them to stop the unnecessary delays: http://sarahburgessmusic.tumblr.com/post/70023219459/wednesday-i-traveled-to-washington-dc-for-the
Thanks so much CureDuchenne!!!
By Scott Tady firstname.lastname@example.org | Posted: Sunday, December 8, 2013 6:45 am
BEAVER FALLS — Sarah Burgess remembers being a cynical, stardom-craving singer like countless other “American Idol” contestants who appeared on the hit TV show before or after her.
But now at 26, the Beaver Falls resident has a much brighter outlook and more selfless purpose, driven by a deeply personal motive.
Last Tuesday, Burgess released her single, “Run Away” inspired by her 7-year-old brother, Jacob, who is battling Duchenne muscular dystrophy.
Her pop song and YouTube video, that includes Jacob and a boy from Cleveland with Duchenne, imparts messages of finding hope, keeping faith and realizing loved ones are there for support.
CureDuchenne, a national advocacy agency, has adopted the song, hoping it will garner attention and provide encouragement for families affected by the crippling disease that almost exclusively targets boys who are usually in a wheelchair by age 10, and face an average life expectancy of 25.
"Sarah’s song has potential to reach way out beyond the Duchenne community, and unite a lot of us in hope," said Debra Miller, the California mother who founded CureDuchenne in 2003 after her son was diagnosed with the disease.
Miller will meet Burgess for the first time Monday, flying into Pittsburgh for a visit before the two of them join other Duchenne families Thursday in Washington, D.C., at a public hearing hosted by the Federal Drug Administration. The FDA recently denied accelerated approval of a test drug that has showed promise in slowing down muscular degradation in Duchenne patients.
Burgess hopes her FDA testimony will help the clinical trial get back on a fast track, as she’s seen the potential it provides since befriending a Pittsburgh boy, whose Duchenne symptoms have lessened since his family was among the dozen approved for the experimental drug.
Burgess also planned to visit Cleveland this weekend to help out with two Duchenne fundraisers, one launched by the Wolf family whose son is in her music video.
"This is my job now," said Burgess, who lives in Beaver Falls with her husband, Mark Bembnowski.
Her brother, Jacob, dwells with their parents, Bob and Melody, in Nashville. They moved there for Bob to take a restaurant chain management job.
Burgess can walk into a Beaver coffee shop unrecognized, but she’s well-known to youngsters in Switzerland, where earlier this year she appeared alone on the cover of 4 Teens (formerly Swiss Youth), a German-language magazine targeting youths aged 11 to 18. The magazine touted a free download of Burgess’ “Sassy” from her 2013 album, “Just Me.”
The career path has been long, winding and unusual for Burgess since her 2007 “American Idol” appearance where she won the hearts of viewers — and judges Paula Abdul and Simon Cowell — with a tearful tale of how she had disobeyed her father by running off to audition in New York.
By a 2-1 judges tally Burgess — an East Palestine, Ohio, resident at the time — earned her golden ticket to Hollywood, where she was quickly eliminated from the contest before fans could vote.
Her TV time was brief, but she made enough of an impact to attract the attention of indie labels, one of which released her debut single “Dangerouz” that briefly landed on the Billboard Top-40 Dance chart after she had moved to Beaver Falls.
She opened for “American Idol” star Daugherty at the Colorado State Fair and released a 2009 album in Japan, yet radio airplay eluded her.
She tried the typical pop-star strategies, like striking leggy poses in glammed-up publicity photos.
"I did what every girl singer seems to do and tried to be sexy and pretty and beautiful," Burgess said. "Though that’s just not me."
Her attitude adjusted, and her musical mission materialized after brother Jacob was diagnosed with Duchenne muscular dystrophy two years ago.
"I used to be one of those cynical people and selfish," Burgess said.
But then she recognized an opportunity to be an advocate and a voice for Jacob and other Duchenne patients “and it completely changed me. It took something like that to realize what’s important,” she said.
Jacob’s physical condition prevents him from climbing steps or running, though his spirit, curiosity and intelligence are keen. Without a cure or stabilizer, though, he eventually will lose ability to use his arms.
"At this point, giving a hug is impossible," Burgess said.
In writing “Run Away,” Burgess chose a positive, hopeful tone likely to be carried on through her future songs.
"There’s enough negativity in music right now; life isn’t that bad," Burgess said. "Life is actually good."
Duchenne families, who maintain a tight-knit bond on Facebook, have taken an immediate shine to Burgess and the uplifting “Run Away.”
"She’s just a breath of fresh air," Miller said. "There’s a lot of heartache out there, and parents are afraid. They hear mixed messages, and with all the red-tape and politics you want to scream sometimes. But that’s where Sarah comes in and says, ‘Let’s just talk about the kids and how special they are and how we can help them.’"
It’s a long way from “American Idol,” though Burgess believes she’s found her true voice on her Duchenne-inspired song.
She said, “Hopefully, it raises awareness.”