PMD Family Stories

Read about and connect with PMD families.

One of the functions of the PMD Foundation website is to bring everyone together as a community. It is our intention that families with PMD-affected children should get to know one another. Our community of families tell us that this is particularly helpful when they first receive a diagnosis.

Our goal is to make it easier for the PMD community to connect.

If you’d like to be connected to a PMD family, you can CONTACT US.

*Camden Holmes was diagnosed with PMD at 13-months of age.*

Share your story with our PMD families

Connections form community.

Family stories help heal, inform, and inspire people in our PMD community. Sharing your experiences also raises awareness of very important issues and potential areas to study.

That’s why the PMD Foundation wants to hear from you! We’re collecting stories of families and people living with PMD.

Details:

Write your story in first (your experience) or third person (their experience).
Take as much space as you need to - stories can be 100 or 1,000 words!
Email accompanying photos to contact@pmdfoundation.com after submitting your story.
Please accept the terms that we’ll potentially feature your family story on the website and on social media.
Our staff will read your story and contact you if your story will be included in this year’s project!

Author's Name

First Name

Last Name

Subject's Name

(if different from author's name)

Author's Email

City

State

Phone

(###)

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Story

I authorize this story to be published on the PMD Foundation’s website and social media for public consumption.

I understand that some editing may be required to correct grammatical errors and improve readability.

Recent Family Stories

Featured

The DeMartini Family Story

Submitted by Ashley’s mother, Megan:

Ashley was born after a normal pregnancy in July 2014. We started noticing nystagmus around 4 months and, after seeing an ophthalmologist, Ashley had a brain MRI at 6 months. The scan found spots, but we weren’t given a diagnosis.

The Greenway Family Story

Submitted by River’s dad. Storm:

River has gone through two very distinct journeys in his young life so far. First, after 36 hours of labor River was born with Hypoxic Ischemic Encephalopathy and a subgaleal hemorrhage. After a perfectly normal pregnancy, we were told on day one that it could be River’s last.

The Rozhkova Family Story

Submitted by Glib’s mother, Larysa:

Glib was born in 2017. We began to have serious concerns for his health when, at 2.5 months, he had trouble holding his head up, was generally lethargic, was slow to gain weight, and developed stridor and nystagmus.

The Mirali Family Story

Tiara was born in February 2023 and, despite some concerns during my pregnancy about her size, she arrived via normal delivery. She was a beautiful baby and everything seemed fine.

Brant Dunham, Family Story

Hi, My name is Angi and I am mom to my son, Brant, now four years old, who is the center of my universe. He is fiercely loved by my husband and I, his older sisters, and everyone who is uniquely blessed to know him. He is a sufferer of Pelizaeus-Merzbacher Disease.

Gasperetti Brothers, Family Story

My name is Robert and I live in Franklin Square, New York with my family. My wife Kristen and I have four sons; Brian (27) Trevor (25), Andrew (22), and Dylan (20). All of them are currently living at home.

Jack Leonard, Family Story

My name is Jeff and my second child (Jack) was born 7 ½ pounds and 20 inches long in March 2000 through a full-term, normal pregnancy and delivery. The moment he was born Jack let out…

Leonardo Xavier, Family Story

My name is Carlos Labrada and my son Leonardo Xavier was born on February 8, 2013 in San Diego CA. Our youngest of three children. From the moments we first laid eyes on him, we were in love.

James Erena, Family Story

James was born in September of 1989. At about four or five months of age, his childcare provider expressed concerns about his not moving around in an age appropriate way. We took him to the pediatrician, who said..

Jaden Manley, Family Story

Hello, my name is Dave and this is my son Jaden. We live in Mexico, NY. Jaden is 21 years old and we received his diagnosis of Classic Pelizaeus-Merzbacher Disease when he was only 18 months old.