CMD Perspectives

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“Buddies Never Break”

By Wayne Ogata

Recently, I returned home to find my son Alex (7) and daughter Tracy (16) arguing with each other. As customary, I turned to Tracy and told her she needs to understand Alex better and be aware of his limitations.  Continue reading “Buddies Never Break”

A Mother’s Perspective on Scoliosis Surgery

By Tammy White

Scoliosis surgery.  We had been used to hearing these words for quite a few years.  Frankly, they scared us.  We fought so that our daughter, Isabelle, would not have to experience the reality of these words.  We thought if we just worked hard enough or tried enough therapies we would avoid the need for scoliosis surgery altogether. Continue reading A Mother’s Perspective on Scoliosis Surgery

A Mother’s Touch

By Ann Schrooten

“The physical acts we perform for our children easily become tiresome chores. There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child’s need. Continue reading A Mother’s Touch

Assistive Technology

By Joe Pinkelman

Our daughter Maia is mute, but can hear perfectly well.  She is also mentally delayed, so to add to the fact that she can’t talk, her response time is slow.  Her first one-on-one aide decided that she was going to teach her sign language.  Continue reading Assistive Technology

Management of a Ventilator Dependent Child – A Caregiver’s Perspective

By Ann Schrooten

PART II – The Personal Perspective

The Role and Challenges of the Caregiver

Caring for a child who is ventilator dependent requires 24/7 vigilance and involves a level of skill and knowledge that exceeds the typical parent’s experience. Continue reading Management of a Ventilator Dependent Child – A Caregiver’s Perspective

Push Through

By Simon Cantos

As I look back on what I have accomplished so far, I wonder where I found the motivation to do it.  During the conferences that I have attend over the years, kids and parents always seemed amazed with the things that I have done: drive a car, work full-time, and live a somewhat independent life. Continue reading Push Through

The Road Ain’t Straight: It’s the Peaks You Wait For!

By Kimm Eckhoff

Transitioning Demi into college began several years prior to her high school graduation.  I approached Vocational Rehabilitation and Demi went through their testing to determine that she would receive services, and that she had the intelligence to realistically pursue a college degree.  VR also suggested she attend several workshops they offer, from college note taking (she can’t use her hands) to leadership.  We did them all and played the game. Continue reading The Road Ain’t Straight: It’s the Peaks You Wait For!

Breathing Easier

By, Krista Brown

Breathing was one of those automatic functions that my family easily took for granted years ago. Not anymore!   Our son Joshua has Ullrich congenital muscular dystrophy, and restrictive respiratory disease.  He is now a fifteen-year old high school sophomore that has a challenging schedule and social life, which he tries to keep up with.   Like others on this journey through life with a muscle disease, there have been ups, downs, and plateaus of all kinds.

Continue reading Breathing Easier

Placing Nicolas in School, With an Aide

By Aty Piedra

My son Nicolas is 4 years old and suffers from L-CMD, a CMD subtype caused by a mutation in the lamin A/C gene. When Nicolas was 2 ½ years old, the local Early Intervention Program (EIP) evaluated him before his transition into the Pre-K Exceptional Student Education program (ESE). Continue reading Placing Nicolas in School, With an Aide

Dating, Marriage and Transitioning to Independent Living

By Jennifer Baker

Growing up, you always thought about what you wanted to be when you got older. And your parents always said you could do it. As you get older, you start to realize that things are a little harder than you first thought. Continue reading Dating, Marriage and Transitioning to Independent Living

Management of a Ventilator Dependent Child – A Caregiver’s Perspective

By Ann Schrooten

PART I — The Technical Perspective

My son, Jack, is thirteen years old and he has an unknown subtype of dystroglycanopathy congenital muscular dystrophy.  Jack suffers from severe muscle weakness and respiratory insufficiency and has been ventilator dependent since he was four months old. Continue reading Management of a Ventilator Dependent Child – A Caregiver’s Perspective

Our journey with Walker Warburg Syndrome: Life, Death and Our Mission to Help Find a Cure

By Brendan Sullivan

As a military veteran who has traveled the world, I experienced more in a 6 year period than many people will ever get to experience.   I’ve been to countries that the majority of people will never be able to travel to.  But I’ve also experienced, twice, something which no one ever wants to experience:  I’ve buried two children in the past 5 years due to a rare form of Congenital Muscular Dystrophy known as Walker Warburg Syndrome (WWS). Continue reading Our journey with Walker Warburg Syndrome: Life, Death and Our Mission to Help Find a Cure

My Daughter’s Successful Scoliosis Surgery

By Dorette Clemons

My daughter, Dana, is 12 years old and has Merosin Negative Congenital Muscular Dystrophy.  For the past several years she has had numerous x-rays of her spine to monitor any changes with her scoliosis.  About a year ago her orthopedic specialist decided it was time for a second opinion. Continue reading My Daughter’s Successful Scoliosis Surgery

Embracing the Slopes

By Jill Hunter

I used to love winter.  I grew up in New Hampshire, and when my daughter Elisabeth was born in New Mexico over 9 years ago, we moved back to my home state.  Both my husband and I have a fondness for the outdoors and we wanted our daughter to grow up with the same appreciation of nature and enjoy the four beautiful seasons that New Hampshire has to offer.  Continue reading Embracing the Slopes

Twins Against CMD

By Anonymous

We have twin two-and-a-half year-old daughters who were diagnosed with Merosin Deficient Muscular Dystrophy (MDC1A) when they were eight months old. Neither of us has any family history of neuromuscular problems so this was a big shock to us; new parents, in a new city, in a down economy, etc.  We’ve accumulated a lot of hard-fought lessons from the CMD battlefield–most importantly, how their digestive health and their respiratory health are so intertwined.

Continue reading Twins Against CMD

Tongue Reductions – My First Steps Toward Reconstructive Jaw Surgery

By Caitlin Bartley.

I’m 21 years old and I have Merosin-Deficient Congenital Muscular Dystrophy.  Like a lot of people with this disease, I have some facial deformities.  I have an elongated face and what is called an “open bite” – I only have a couple of teeth on each side that touch when I bite down.  I can’t make my lips touch together at all.  My tongue is enlarged, and the roof of my mouth goes up really high.  All of this can be corrected surgically, but it’s a very long process.  So, let me start from the beginning. Continue reading Tongue Reductions – My First Steps Toward Reconstructive Jaw Surgery

Breathing Matters

By Kelly Berg

I am a 37-year-old female and I have Congenital Muscular Dystrophy.  With CMD,  the degree of respiratory involvement varies.  My respiratory weakness began in early childhood and has slowly progressed as I’ve gotten older.   Continue reading Breathing Matters

Honoring Mothers of Children with Disabilities

By April Olson

Mothering is a blessing. All mothers want their child to have the best of what the world offers.  As we parent, we hope our children will reach their full potential.

I am a mother of a healthy 19-year-old-young woman. I am also a mother of a 12-year-old boy with a rare congenital muscular disease. Continue reading Honoring Mothers of Children with Disabilities

Terminally Ill

By Jasmine Bailey-Barfuss

Terminally Ill is a grown up term – so is Chronic, A-typical, Sick.  I don’t like any of these words.  But I don’t believe an agreeable term actually exists for: my children are sick and struggle in some way every day.  And they’re all words that I hope I don’t say too often around my children. Continue reading Terminally Ill

To Exercise or Not To Exercise?

By Mary Gallo

“To Exercise or Not To Exercise?”  This is an important question to ask before considering a workout program for a person living with a muscle disease.  You want to try and build muscle, but if you overdo it, working out can leave your muscles feeling “wasted” and weaker than when you started. For anyone with a muscle disease, working out is a very fine balancing act. Continue reading To Exercise or Not To Exercise?

A Journey to Respiratory Health

By Sarah

Adam, now 11 years old, was diagnosed with Centronuclear Myopathy (CNM – genetic form unknown) at around 1 year of age. This is a story of our family’s journey to find the best respiratory health for him. Continue reading A Journey to Respiratory Health

An Unbeaten Path

By Sarah Rose

(UCMD, England)

“You won’t last two weeks,” said my Dad.  I was eighteen years old, about to leave home for university. I realize now that this was his way of giving me the determination to get through three years of studying and living without the safety net of my parents and my little sister. Continue reading An Unbeaten Path

Coming Home

By Brendan Sullivan

Bringing a baby home is stressful for any parent, even when the baby is healthy.  But when you know you are bringing home a baby who has special needs and a likely fatal form of Congenital Muscular Dystrophy, your stress level shoots through the roof.  Continue reading Coming Home

Winter Reflections

By Christina Houck

In like a lion, out like a lamb. This month we celebrate the incredible strength of two more families, Marching on!

The winter doldrums can take on many forms, but one constant is that winter weather presents many challenges for families with CMD. As we bid adieu to winter and welcome spring, we asked Christina Houck to reflect upon the winter season: what it means for her family, what she dreads and how they deal with hospitalizations. Continue reading Winter Reflections

The JW Walker

By Jennifer Gluck

Picture this:  A little boy is at the ocean.  He’s standing at the edge of the water with his Daddy when a wave comes in.  The boy screams and runs away trying not to let the wave catch him.  As the wave recedes, he runs forward giggling.  This is my older son, Owen, who is unaffected by CMD.    Continue reading The JW Walker

  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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