by Shayna Millizer
about the author:
Shayna Millizer is 39 years old and is a manifesting carrier of Duchenne Muscular Dystrophy. She has 2 young daughters.
I’m A Manifesting Carrier
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 is, and always has been, the strongest person I know. I can remember being around 8 or 9 and I couldn’t keep up with her running. I was on a bicycle.
She took care of him daily. Baths, bathroom breaks, keeping his bedding clean. Feeding him when he lost hand function, and most importantly, loving him.
I can remember the day he passed like it was yesterday. I was picked up from work by my dad and my ex-husband. I wish I could tell you it was a relief he would no longer suffer. But to hear he didn’t want to prolong the suffering – not only from his own perspective but also him looking at the care my mom would sacrifice to give him – I knew that was not something any of us were prepared to bear.
The traffic. 3 hours in stand-still traffic to Nashville TN Vanderbilt Hospital. The nursing staff in ICU are amazing. I don’t remember the time he died. I wish I did but I don’t. I have to be reminded by family or Facebook post.
I can remember after, being outside and wishing we were over Duchenne. That it was no longer part of our lives. But I knew in the back of my mind it was still there.
My First Child
In 2015, I had my first child. It took a full week after induced labor (with an epidural for 18 hours followed by a cesarean) that I would be able to walk. Soon after, I realized I could no longer get up off the floor or get up stairs.
I was made to be out as a fake from my family and my husband of 18 years. We had all witnessed his death, so even I thought somehow I had been responsible. Maybe my trauma from watching him pass caused it.
I was fortunate to have a local neurologist who knew exactly what was wrong after I explained my family history. I spent 6 months doing physical therapy and worked out daily after a 10 hour shift at the local factory. I would fall doing a stair machine with my colleagues often present. I can remember living in an area with a very steep hill and my ex-husband allowed my daughter to run to the top before helping because he thought I was faking.
I went to a Neuromuscular Clinic at Vanderbilt and was told I just needed to lose weight. I was 157 pounds up from my usual 120 pounds. I couldn’t lose weight or build muscle no matter how hard I tried.
I told my family, but I knew they didn’t want to think about it. And in 2022, they said they never knew.
I struggled playing soccer. I was always the last on a mile run. I couldn’t run bleachers. My calves would and still do get so tight I could not walk. I honestly thought I was a horrible athlete. I always enjoyed hiking until I didn’t.
My Second Child
After my second child and a scheduled C section I was scared. I had issues with anesthesia and my temperature dropped to 95. I thought I was going to die. It was still several days before I left the hospital and – once again – struggled with severe post partem depression and little help from family.
My neurologist moved to another state and I was forced to get a new one. I began to notice weakness in my arms. It had become very difficult to pick up my 3 month old.
The new neurologist was awful. Did not believe me even with genetic testing. He convinced me after CPK blood work elevation I needed an IV to prevent kidney failure.
With guidance from the clinic at Vanderbilt, I reached out to PPMD in 2021 after a second IV infusion. I am forever grateful towards them, but my family still cannot accept it. I’ve been cut off, told I should get over his death and quit being lazy.
It Wasn’t in My Head
I contributed to a study at the University of Florida for manifesting carriers. It was a relief to know that it wasn’t in my head, but at the same time having no one in my family truly want to listen… it didn’t help as much as I had hoped.
I want to give back to help prevent a child from being diagnosed possibly. I didn’t expect to feel empty. I can remember seeing Tim Gillen and that urge to help was encouraging.
I have been off work since April of this year – 2022. I applied for short term disability and was denied. I had to get an EMG. It showed I had a chronic muscle disease. I had to endure months of physical therapy, with weights, which I now know is not good. It only made the pain worse and did not help with my ability to pick up my now 3 year old.
Life is not easy.
I find the only support for this is in PPMD and these beautiful Facebook groups. And now even my neurologist. You have to do research, reach out to people you normally wouldn’t, and be an advocate for your own health.
It’s not easy. Life isn’t easy.
But your significant other should be there to help. Your own blood should be there.
Shayna, you are a very strong and courageous person for sharing your struggles with acceptance, especially among family! Family should be there for us no matter what, I truly hope they will come to see that your struggles are real. I’m glad that you have found support in PPMD, they are a great organization.
Praying for you and your family 🙏❤️. I found out in Nov. 2021 My son has Duchenne Muscular Dystrophy and I am a carrier.. I had weakness in my legs when I was near teenage years but just thought maybe it was arthritis or growing pains. Then as I got older the pain , weakness left. Then my son started falling a lot and sweating a lot at night and next thing he’s at children’s hospital getting genetic testing done. We take him to Vanderbilt DMD clinic.