Our Son Trent was born with Duchenne Muscular Dystrophy (DMD), a rare and incurable disease affecting 1 in every 3500 boys born each year. This 100% fatal disease causes progressive muscle weakness that ultimately leads to life-threatening heart and lung complications. The average lifespan of a child suffering from DMD is mid-to-late 20s.
Trent attends therapy 3-4 times per week and that will only increase as he grows older. He is constantly visiting different doctors across the nation for the best treatment possible.
Powers Promise was created to promote awareness, educate others and partner with DMD organizations to help find a cure.
We thank you from the bottom of our hearts for your support!
Kimberly and Trevor Powers
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🍷 One Hope Wine Fundraiser 🍷
Looking for a unique way to give back to Powers Promise? We are excited to partner with ✨One Hope Wine✨This company was built on the belief of giving back to causes and charities closest to each consultants’ heart.
By supporting this fundraiser, 10% of your purchase will be donated directly to Powers Promise! 💚 Because of your purchase we will be able to contribute towards helping researchers find a cure.
With the kids going back to school and now is the perfect time to restock your wine racks 🍾
We welcome you to browse through this fundraiser link and find your favorite wine. You can start filling your cart to give back by clicking here:
🛒 www.onehopewine.com/event/61374 ... See MoreSee Less
Today is WORLD DUCHENNE DAY. The significance of the date represents the 7th day of the 9th month...for the 79 Exons in the dystrophin gene. Just one mistake in this large gene causes the muscles to stop producing dystrophin and the result is Duchenne.
🎈🎈September 7th is World Duchenne Awareness Day.
On this day, we raise awareness for Duchenne Muscular Dystrophy around the globe 🌎.
🎈🎈WHAT IS DUCHENNE?
Duchenne muscular dystrophy (DMD) is a rare X-linked recessive genetic disorder, caused by mutations in the dystrophin gene which encodes the protein dystrophin. 🧬 With Duchenne, the body doesn't make dystrophin. Without dystrophin, muscle cells become damaged and weaken. The disorder is usually inherited but can occur when the gene mutates spontaneously. (This means it can happen to any family, as it did to mine.)
🎈🎈HOW IS THE BODY AFFECTED BY DUCHENNE?
Duchenne causes progressive weakness and loss of muscle mass in the skeletal muscles and the heart muscle. This muscle weakness begins to show in early childhood, with diagnosis usually between ages 4-6 years old. Most children will need to use a wheelchair by their early teens and others a little more early ♿ Heart and breathing problems will also lead to serious, life threatening complications. 💔 The most common cause of death is heart failure from cardiomyopathy.
🎈🎈DUCHENNE'S EFFECT ON THE BRAIN...
Children with Duchenne are more likely to have conditions affecting the brain, such as mental health, learning, or seizure disorders. The lack of dystrophin is believed to affect the ability of neurons to connect properly and share information in the brain. This causes challenges with important brain functions such as attention, memory, learning, speech, and intellectual ability. Children with Duchenne are more likely to have the following:
Obsessive Compulsive Disorder
Today there is still no cure. We won’t stop until we have one!🎈🎈🎈🎈
#EndDuchenne #WDAW2020 #ppmd #hisnameistrent ... See MoreSee Less
Tomorrow, September 7, is World Duchenne Awareness Day. Duchenne Muscular Dystrophy is a progressive, muscle wasting condition that at this time has no cure (we’re working on that). This red balloon honors Trent and all the other boys affected by DMD. It is also in loving memory of those that are no longer with us. ⠀
One of the most amazing lessons this has taught me is to not let a label limit who we are or where we’re going. And if you can muster enough strength, maybe even use that label to empower yourself to see how far you can reach, how big you can dream. ⠀
Trent might be labelled with DMD but we won’t let that limit or define him. He amazes me every single day and I have said “I never knew if I would see this day so many times. This year alone he is running faster, jumping higher, wrestling with his dad, mini golfing, boogie boarding, going up and down the stairs with ease- just to name a few.
We celebrate all of these things, not just the first time they happen, but almost every single day, every single time they happen. You see, because DMD is progressive, we don’t know how much longer he will be able to do these things. But we don’t let that stop us from embracing new experiences, exposures, and challenges. We try, and try, and try again. Without pressure, but with excitement and zest. And that is what makes Trent so special. He never stops trying.
People might think I’m looking at life through rose-colored glasses. To them I say, “Thanks. They were a gift from my son,Trent”.
Please consider taking a moment to flood social media with a red balloon, share a fact or a story about DMD, wear red and help us raise awareness 🎈
www.powerspromise.org ... See MoreSee Less
7 months ago
Today is #RareDiseaseDay - a global campaign on the last day of February, a month known for having a rare number of days, to raise awareness about rare disease and the impact on patients lives.
THANK YOU to our community for raising awareness on Duchenne muscular dystrophy, funding the fight to end Duchenne and giving HOPE to all those affected by this rare disease! We will not stop until we find a cure! #rarediseaseday #hisnameistrent #enduchenne ... See MoreSee Less