PMM2-CDG

Feed
Contributors
Create a new post for topic
Join the Conversation on
PMM2-CDG
61 people
0 stories
56 posts
About PMM2-CDG Show topic details
Explore Our Newsletters
What's New in PMM2-CDG
All
Stories
Posts
Videos
Latest
Trending
Story
mother holding daughter's hand in the hospital
mother holding daughter's hand in the hospital
Karen Morici
 • 
PMM2-CDG
6y

To the Parent Whose Child Is Constantly in the Hospital

Dear parent whose child is constantly in the hospital, I know that during long hospital stays with your baby, days become perpetually the same. You start ignoring the beeps from the monitors because it blends in with the rest of the familiar noise. You look forward to the nurses coming in to do vitals so [...]
Share this post Share
See all comments Be first 1.6K
Save
Story
Melissa Schlemmer
 • 
PMM2-CDG
8y

Why I'm Not Ready for My Son to Use a Wheelchair

I’m at an emotional crossroads with our youngest son. I knew this day was coming. I was prepared for it, yet I’m prolonging it. Melissa’s son. Our son has PMM2 CDG (also known as CDG 1a), a metabolic disorder that affects nearly every part of his body. His muscle tone is severely affected as he [...]
Share this post Share
See all comments 6 827
Save
Story
mom and her son christopher smiling
mom and her son christopher smiling
Melissa Schlemmer
 • 
PMM2-CDG
8y

To Moms and Dads Whose Child Just Received a Life-Threatening Diagnosis

I know you’re scared. I’ll never forget the words from our neurologist when she told us our child has congenital disorder of glycosylation (PMM2-CDG). She told us this was not a sprint, and we were beginning the longest marathon of our lives. And that’s exactly what I wanted to do. Run. I wanted to scoop up [...]
Share this post Share
See all comments Be first 1.4K
Save
Story
A dark image and close up of a middle aged woman rubbing her eyes and holding her head, as if in anguish, or with a bad headache.
A dark image and close up of a middle aged woman rubbing her eyes and holding her head, as if in anguish, or with a bad headache.
Melissa Schlemmer
 • 
PMM2-CDG
8y

Losing a Child With the Same Disorder as My Son

I know my son lives with a life-threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially when we lose another of our community. While processing another loss, our son’s [...]
Share this post Share
See all comments Be first 50
Save
Story
Melissa Schlemmer
 • 
PMM2-CDG
8y

When Choosing a Feeding Tube Felt Like Failing My Son

I will never forget our first appointment with our son’s gastroenterologist. Our son was 9 months old and barely over 9 pounds. We went there with the intention of discussing placing a feeding tube for our son. Our efforts to help him gain weight were futile. We tried adding calories. We tried more meals. We [...]
Share this post Share
See all comments Be first 673
Save
Story
Melissa Schlemmer
 • 
Uncategorized Disorders
8y

My Child Is Not 'Broken'

An old friend of mine would occasionally call her child with medical complexities “broken.” I would smile and go along with her, but it always bothered me. I do understand the need to have humor in our lives. I understand that people all cope differently under stress and unusual circumstances. Believe me, our lives need laughter. But I kept [...]
Share this post Share
See all comments Be first 804
Save
Story
Melissa Schlemmer
 • 
Uncategorized Disorders
8y

A Doctor’s 3 Words Reassured Me When I Questioned If My Son Has Too Much Therapy

My son’s neurologist has always been one of his greatest cheerleaders. I will never forget what she said to me that made me realize she is also one of mine. Our son has PMM2-CDG (also known as congenital disorder of glycosylation type 1a), a rare genetic condition that affects him from his head to his toes. He has [...]
Share this post Share
See all comments Be first 405
Save
Story
Melissa Schlemmer
 • 
Uncategorized Disorders
8y

I’m Not the Mother I Was ‘Supposed to Be'

I used to think I would be the mom at the playground sitting on the bench casually chatting with other moms. I envisioned myself holding my coffee talking about planning playdates and new Pinterest crafts. The other mothers and I would laugh and talk about the silly things our children did while calling out to [...]
Share this post Share
See all comments 2 614
Save
Story
Melissa Schlemmer
 • 
Uncategorized Disorders
8y

I'm Not the Person I Was Before I Had a Child With Special Needs

The other day I was reading a post reminding parents not to lose themselves or forget who they were before they became a parent of a child with special needs. The article was telling parents to make time for the things they loved and the friends they laughed with before their world completely changed. I understand the intention [...]
Share this post Share
See all comments 40 41.6K
Save