– Stories of struggles and joys as told by our Duchenne community –
heading
Love Despite Duchenne
by Angela Renczarski about the author: Angela has a teenage son with Duchenne and an adult daughter. She’s happily engaged to a gentleman who also has Duchenne. She is a health coach and life coach in Kansas City. Angela can always be found driving Xavier around in the van and laughing at Ryan’s jokes.…
My Brother Is Different
about the author: Marilyn Nieto is the sister of Jhonny Nieto, and the daughter of Marisela Elvir & Anacleto Nieto. My younger brother has Duchenne Muscular Dystrophy. He was diagnosed when he was 6. I was 11. It was summer break. Little did I know how much would change this summer break. I still…
“Transformative” Medicine?
by Dr. Kathryn Wagner about the author: Dr. Kathryn Wagner is a clinician-scientist with over 20 years of caring for children and adults with neurological disease and directing clinical and translational research to develop novel therapies for these disabling and frequently fatal disorders. Today I write not as an employee of a pharmaceutical company…
Disabled Daddy
by John Buchbach about the author: John Buchbach is 45 years old with Duchenne muscular dystrophy (DMD), a terminal muscle wasting disease. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business, and now, being a dedicated family man. Over the past 43 years, I have…
Navigating Love with a Disability
by Ryan Russell, PhD about the author: Dr. Ryan Russell is a life coach, a consultant and speaker, with a PhD in Psychology. He also has Duchenne Muscular Dystrophy and is 41 years old. For more about Dr. Russell: https://lifeonpositivity.com/ Navigating Love with a Disability:Practical Insights and Personal Triumphs Not too long ago, I…
Dreams Really Do Come True
by Ryan Russell about the author: Dr. Ryan Russell is a life coach, a consultant and speaker, with a PhD in Psychology. He also has Duchenne Muscular Dystrophy and is 42 years old. For more about Dr. Russell: https://lifeonpositivity.com/ I’m writing to you today with a personal update that has warmed my heart and given…
Fighting for Myself
by Danielle Dwiggins about the author: Danielle Dwiggins is a nurse, wife, and mother. Her son has Duchenne and she was recently diagnosed as a carrier of Duchenne Muscular Dystrophy. As a mom and a nurse, I’ve always taken care of others before myself. It’s easy to fall into burnout. How am I supposed…
Mother-Daughter Carriers – Part 1
by Audrey Elliff about the author: Audrey Elliff is 23 years old. She was the first person in her family diagnosed with the DMD mutation. She is also the first manifesting carrier in her family. My name is Audrey Elliff, I am 21 years old. My story is definitely different than most that I’ve…
Mother-Daughter Carriers – Part 2
by Misty Elliff about the author: Misty Elliff is 52 years old and recently diagnosed as the first carrier in her family. My name is Misty Elliff. I am 51 years old, married, and have 4 children: 2 boys and 2 girls. My story is somewhat different from most because I did not find…
The Next Best Thing
by Oliver Groom about the author: Oli Groom is 31 years old with Duchenne Muscular Dystrophy. He lives independently in New Zealand, loves music and his cats, too. He can be reached at Oli.Groom@FamilyFriendsAndDuchenne.org My name is Oliver, I am 31 and I have Duchenne. I was born in 1992 and I currently live…
My Journey as a Transgender Woman with DMD – Part 2
By Mallory B.T. Dupree about the author: Mallory Dupree is a 30 year old transgender woman who was diagnosed with Duchenne at age 9. She graduated from Southern Methodist University with a B.S. in Biochemistry. Mallory has been involved in advocacy since 2012 and has served as a Patient Representative for the U.S. Food…
My Journey as a Transgender Woman with DMD – Part 1
by Mallory B.T. Dupree about the author: Mallory Dupree is a 30 year old transgender woman who was diagnosed with DMD at age 9. She graduated from Southern Methodist University with a B.S. in Biochemistry. Mallory has been involved in advocacy since 2012 and has served as a Patient Representative for the U.S. Food…
In Retrospect
about the author: Oli Groom is 31 years old with DMD. He lives independently in New Zealand, loves music, travelling, and his cats, too. When I was diagnosed with Duchenne, I was expected to die by about 15. In a few days, I will be 31, which means I have lived to double my…
This Journey with Duchenne: Part 3
by Lorena Peinado and Jeff Reinhardt about the author: Lorena Peinado is 43 years old, originally from Chihuahua, Mexico. In 2011, she moved to the United States. She currently lives in Arizona and is a single mother of two beautiful children: Alexa, 16, and Gibran, 12. To read part 2 click here. Lorena works…
This Journey with Duchenne: Part 2
about the author: Lorena Peinado is 43 years old, originally from Mexico. In 2011, she moved to the United States. She currently lives in Arizona and is a single mother of two children: Alexa (16) and Gibran (12). Gibran has Duchenne Muscular Dystrophy. To read part 1 click here. In 2016, Lorena found a…
This Journey with Duchenne: Part 1
by Lorena Peinado and Jeff Reinhardt about the author: Lorena Peinado is 43 years old, originally from Chihuahua, Mexico. In 2011, she moved to the United States. She currently lives in Arizona and is a single mother of two beautiful children: Alexa, 16, and Gibran, 12. Gibran loves to spend time in his office.…
I Was His Wife
by Audrey Hrachian about the author: Peter Hrachian was a great inspiration and role model in our Duchenne community. He and his wife, Audrey, were married for 17 years. Peter passed away in August 2022 and Audrey continues to inspire our Duchenne community by sharing their love story. Peter Hrachian was an amazing man.…
My Son, Jason…
written by Sue Tomeschin memory of her son Jason about the author: Sue Tomesch is a Business Analyst at Manulife Bank in Waterloo, Ontario, Canada. She has worked at Manulife for approximately 37 years. Sue is married and has one son. At the age of 2, my son Jason was diagnosed with Duchenne Muscular…
Carriers & Medical Incompetence
by Gill Nock about the author: Unbeknownst to her for decades, Gill Nock is a carrier of Duchenne Muscular Dystrophy. She is a wildlife artist – particularly bird studies – and loves gardening, opening her garden to charity and raising funds. Her grandson with Duchenne often helps by selling plants from his wheelchair. Mothers,…
My Life – 11 Years Old with Duchenne
by Ditri Filis about the author: Ditri Filis is 11 years old with Duchenne Muscular Dystrophy. He loves animals and video games. He wants to work at the zoo one day, helping out with the big cats. I’m Ditri Filis. I’m 11 years old and I live in Texas. This is my story about…
Nonverbal and Brilliant
Part 3 of Hope: Pass It On about the authors: Paul and Trisha Petersen have five children from the age of 28 to their youngest Owin who was just 6 at this point in his life. Owin, has Duchenne Muscular Dystrophy (DMD) and Autism Spectrum Disorder (ASD). To read part 2 of the story…
Autism + Duchenne
Part 2 of Hope: Pass It On about the authors: Paul and Trisha Petersen have five children with their youngest Owin. Owin, who has Duchenne Muscular Dystrophy (DMD) and Autism Spectrum Disorder (ASD) is 6 years old. You can follow Owin’s journey on Facebook and also by scanning the QR code at the end…
We Waited
Part 1 of Hope, Pass It On about the authors: Paul and Trisha Petersen have five children, from their early 30’s to their youngest, Owin, who, at the time of this entry, was just 6. Owin has Duchenne Muscular Dystrophy (DMD) and Autism Spectrum Disorder (ASD). You can follow Owin’s journey by scanning the…
Thorns
Thorns The thorns we ignorethrob so much more when we loseeverything we love. Julie Liebendorfer,mother of twoDuchenne warriors in Heaven Family, Friends and Duchenne For more about Loss, Grief and Duchenne:
It Will Be Okay
It Will Be Okay To be the siblingof someone who has DMDis kind of rough, but not always. You all just have to knowhow to help out with themand know that it will be okay. You just have to be carefulwhen you have a siblingwith Duchenne. – Zia Vanderburg,13 years old —Family, Friends and…
Your Loving Brother, Karan
by Karan Vaidya about the author: Karan Vaidya is a young man with Duchenne in his mid twenties. His younger brother, Varun, recently passed away. Varun also had Duchenne. My Dear Angel Varun, It’s been a month since you left us on 28 August, 2022. You left behind your dreams, aspirations and thoughts, but…
Transgender with Duchenne
by Anonymous about the author: The author is a parent of a transgender individual with Duchenne Muscular Dystrophy. Due to the sensitive nature of this topic, the author wishes to remain anonymous. Individuals with DMD have unique challenges if they are not comfortable in the gender assigned to them at birth. Of course, there…
The Plea & the Anguish
The Plea & the Anguish He knew he was going to redo thembut this time, he asked,“Could you just goand ask the doctorif I really have to doa blood test again?” – Jade Smith,mother to 8 y.o. sonwith Duchenne —Family, Friends and Duchenne— More to Consider
Like a Hard Level in a Video Game
by Carlito Jacobus about the author: Carlito Jacobus is 15 years old with Duchenne Muscular Dystrophy. He was recently selected by AbleGamers Charity and Family, Friends and Duchenne as the recipient of an accessible gaming laptop as well as many of his favorite Marvel games. Having a muscle disease isn’t easy. It’s like a…
Where I’m From
by Kaley Vides about the author: Kaley Vides is in her 20s and has Duchenne Muscular Dystrophy. She wrote this beautiful piece of poetry when she was a teenager. Published in the Syndic Literary Journal. Where I’m From I’m from ocean waves and medical tests. From the high grasslandsof the country of eternal springs.I…
I Would Never Be Alone
I Would Never Be Alone Knowing that the man I looked up towould go to the ends of the world to help meis the best feeling that I- as a person with Duchenne – could ever feel. At that moment, I realized that I wouldnever be alone on this journey. – DJ Kimble,42 y.o.…
Making Our Voices Heard
by Joeanne Smith about the author: Joeanne Smith is a manifesting carrier of Duchenne Muscular Dystrophy. She has 2 children. Her son, Zak, died from Duchenne at the age of 16. She is a pillar in our community, full of experience, wisdom and compassion. My Doctors Laughed Being a foster child, I have never…
Breaking International Barriers
by Anonymous about the author: As an international family visiting this country, we must remain anonymous to keep opportunities open both for ourselves and for other families like us. We are sharing our family’s story to help the children and families affected by Duchenne Muscular Dystrophy. We want to help break the barriers that…
Humans & Heroes
by Stephen Marchesani about the author: Stephen Marchesani has 2 boys. Vincent is 13. Lance is 10. Lance has Duchenne Muscular Dystrophy. Stephen and his amazing wife, Leah, have been married for almost 20 years. Stephen was a speaker at the 2019 PPMD conference, and also writes his own blog. I have been thinking…
DMD Didn’t End My Life…
By Varun Vaidya about the author: Varun Vaidya is 19 years old. He lives in India. Both he and his older brother have Duchenne Muscular Dystrophy. I am Varun Vaidya, 19 years old, suffering from Duchenne muscular dystrophy (DMD). I am going to share my DMD journey. Helpful Hand for My Brother My elder…
I’m a Manifesting Carrier of Duchenne Muscular Dystrophy
about the author: Shayna Millizer is 39 years old and is a manifesting carrier of Duchenne Muscular Dystrophy. She has 2 young daughters. On April 6th, 2013 my brother passed from Duchenne. My mom screamed. A sound I will never forget. It’s engraved in my mind. My Brother, My Mother My mom Leah Millizer…
Life Goes On (Part 2)
by John Buchbach about the author: John Buchbach is 45 years old Duchenne Muscular Dystrophy. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business. Nowadays, both John and his wife stay busy – raising their young son together. My Story and My Journey Continue… -…
Life Goes On (Part 1)
by John Buchbach about the author: John Buchbach is 45 years old Duchenne Muscular Dystrophy. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business. Nowadays, both John and his wife stay busy – raising their young son together. My Story and My Journey I was…
Way Too Fast
about the author: Jade Smith and her family received her son’s diagnosis of Duchenne on July 7, 2021. They have since created the nonprofit Quade Journey Duchenne Muscular Dystrophy (QJDMD) to educate and support other DMD families in South Africa and around the world. You can find them on Facebook and Instagram. I Just…
I Feel Like I’m Normal…
About the author: Ryan Schmidt, a.k.a Wheelz the Rapper, is a talented 32 year old musician with Duchenne. He loves music. Passionately. Visit SoundCloud to hear Wheelz’s music. You can also find Wheelz on YouTube and Instagram. Having Duchenne is hard sometimes but life is hard sometimes. Duchenne for me, it has its challenges.…
A Tough Road, but I’m Still Here
about the author Matthew Busch is 35 years old with Duchenne Muscular Dystrophy. He uses a powerchair full-time, has had spinal fusion surgery, has a g-tube for feeding and a trach for breathing. He communicates just by moving his eyes. You can find Matthew streaming on his Facebook page, KGWA MattyIce. My Diagnosis ofDuchenne…
Top Life Coach, Dr. Ryan Russell
One of the Silver Linings in Duchenne Dr. Ryan Russell One of the silver linings in this Duchenne journey is the people. Despite our own pain and heartache, we somehow find a way to help other individuals and families who are also struggling. In our Duchenne community, there are always amazing people and amazing…
Regaining Connection with the Outside World
by DJ Kimble About the author: DJ Kimble, a 41 year old man with Duchenne, recently shared some of his story with us. He lost his ability to speak shortly after undergoing a tracheostomy as a teen to help him breathe. After 15 long years, DJ was finally able to communicate with the outside…
