Family Stories

Share your family story with us

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. Knowledge is more easily shared and questions are more easily asked when you know the other people with whom you are communicating. This is particularly helpful to families with new PMD diagnoses who are looking for camaraderie and other families they can relate to by reading your stories.

Unfortunately, as we say, PMD is “rare, but everywhere.” Families often feel like they’re alone with this problem. You can’t go next door and ask about it because your neighbors don’t fully understand what it’s like to have a child with PMD. So this will be our way of making you all “online neighbors.” You will get a glimpse into the lives of others who share the same difficulties and experience the same small joys. We hope to make it easier for individuals to communicate with each other. It’s great to discuss things on a blog/website, but sometimes there are more private questions that you’d like to speak about one-on-one. When given permission, we have included email addresses and/or phone numbers if others would like to reach out to the story author.

Submitting your information

Please send your information to webmaster@pmdfoundation.org.  We will add family stories as we receive them.  When submitting your information and story, please make sure you include the following:

  1. The PMD-affected person’s name
  2. Their birthdate (not age, because that will change), but at least month and year.
  3. For those who are now angels, the date of their passing
  4. Location (city and state, or city and country if outside the U.S.)
  5. Diagnosis – connatal, classic, SPG2 or unknown – and how diagnosed.
  6. Age at diagnosis.
  7. Genetic mutation (duplication, deletion, etc.) if known.
  8. Family info, parents’ names, siblings’ names and where they fall in family order. Does PMD run in the extended family or was this a “first time” incident?
  9. Contact info. If allowed, phone numbers and email addresses will be posted in a way that makes it harder for spammers and hackers to collect them but decipherable for those reading them (ie. onetwothree-fourfivesix-seveneightnineten). Please include your contact info for our records even if you would prefer they not be posted, just tell us one way or the other.
  1. Submit up to 5 pictures, preferably in a size for web posting. (if you don’t have that capability, we can make size adjustments.) Please include at least one picture of the PMD-affected individual by themselves, a “headshot” would be great. We would like to update photos in the USA collage with the new ones where possible.
  2. Please identify others in photos, if not by name, at least by relation (ie. Nick’s Aunt, Jack’s Grandma, etc.)
  3. Permission to post your information and pictures on our website (including contact information if authorized.)
  4. And, of course, your stories. Specific incidents, a summarized history, or whatever format you prefer is acceptable.

 

Family Story

Carson Suter

We are looking into preschool for Carson. He is really intelligent and understands everything and he just loves other children so we think this would be a great opportunity for him.

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Joshua and Evan Hibbets

We are from north Louisiana, but live right now in Hattiesburg Mississippi where David is pursuing a second career in medicine. He will graduate from the William Carey College of Osteopathic Medicine next May.

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Kenny Jude Herndon

Kenny is the happiest child we know, he is always upbeat and ready to meet a new friend. He has been in school since age 4. He loves Scooby Doo and Walmart.. but most of all he likes to listen

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Liam Becker

Liam Christopher Becker was born May 22, 2010. He was 8 weeks premature so over the next year he was delayed in hitting his milestones.

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Leonardo Labrada

Leonardo Xavier Labrada was born on February 8, 2013. He is the youngest of three siblings. He has an older sister (Samantha) and an older brother (Carlitos).

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Garrett & Gavin Jones

The Jones boys, Garrett, 16 and Gavin, 12, were diagnosed with Classic duplication PMD in 2001. Garrett was 3 and Gavin was not yet born.

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Francisco Oller

My name is Francisco Oller, and I was born in San Juan, Puerto Rico. Although I came into this world without any complications, I developed nystagmus within two weeks.

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