As most viewers know, I'm the parent of two small stature daughters. I don't know that I've mentioned that their smallness is undiagnosed. It took me greater than 10 years to accept that medical science had absolutely no answer to why my daughters' are as small as they are. They have no "syndrome" and no known persons like them exist.

I was told it was due to the contribution of a less than perfect gene (defective) contributed by both me and their father that caused it. I found that hard to accept because how likely is it that I hooked up with the one person in the world with the same 'defective' gene that I have.

Why aren't there any other girls/children/people like my daughters? It seems like there should be someone somewhere.

I pondered exposure to environmental contaminants as a possibility. My husband was exposed to Agent Orange in Vietnam. I did live a stone's throw away from a copper mine that we now know leached dozens of contaminants into the well water I drank.

In an effort to find a similar person somewhere in this wide, wide world, I've chosen to post our story. I've listed it in other posts here and have had over 100 hits. It may be futile, but if I don't try, I won't know that.

Please feel free to visit my site. You won't get a virus by going there or reading the pages. It's a bit hard to maneuver around on as the different page tabs are not that obvious.

Warning - Two chapters of MY STORY are posted as of today. The content is personal and speaks blatantly about pregnancy. It not appropriate for adults. It's just a true story.

For those who think this is not LPBW appropriate, I intentionally posted this thread under "The Life Of Little People".

Here's the link, again for those who've not already visited it, and for those who'd like to see it again:

http://www.freewebs.com/twoheartstohold/

Dthomas,

Thanks for sharing your story. You have a beautiful family.

dthomas, I read Chapter 1, and was eagerly awaiting Chapter 2...thanks for sharing your story. I recall how you feel about issues of TV appearances and such, but this could be a book, you know, it's very good writing.

Freddy - I appreciate you compliment

mint - Did you happen to notice Chapter One was 1982 and Chapter Two was earlier - 1978? I felt going out of chronological order was necessary because I have two little daughters today, Amber and Kristy, but I did have a third, Heather, before the Amber and Kristy.

The baby born to my sister in June 1978 (Chapter Two... hers was a boy!) can been seen in the wedding pictures of 2005. He's the one standing giving his Best Man's speech to my oldest son, Jason.

quote:

Originally posted by dthomastlc:
...Warning - Two chapters of MY STORY are posted as of today. The content is personal and speaks blatantly about pregnancy.

----It not appropriate for adults.-----

It's just a true story.

http://www.freewebs.com/twoheartstohold/

What was I thinking when I typed that????
I meant to write:

IT IS APPROPRIATE FOR ADULTS.

What a difference a typo can make!

I think I'd originally typed "It's not inappropriate...", and realized I had a double negative, so I edited out "in", but forgot to remove the "not". EMBARASSING

I guess that's bad news for those looking for 'not appropriate' reading!!!

and mint - thank you, too, for your feedback. As you've seen I tend to write 'novels' when I post, so writing these chapters was another way for me to express what's in my mind.

Yes, the past 25 years (30 if I begin in 1978) were filled with very unusual and interesting events... and they continue today.

quote:

Originally posted by dthomastlc:
and mint - thank you, too, for your feedback. As you've seen I tend to write 'novels' when I post, so writing these chapters was another way for me to express what's in my mind.

Yes, the past 25 years (30 if I begin in 1978) were filled with very unusual and interesting events... and they continue today.

Thanks, dt...I AM a bit confused, but think Kris is the youngest?

quote:

Originally posted by mintjulep_ageless:
...Thanks, dt...I AM a bit confused, but think Kris is the youngest?

OOps, there must be a fluke in my Chapters. I'll re-read them.

Here's how the birth order went:

Heather - May 7, 1978 - 4 lbs. 3oz., 17" still born (Chapter Two)

Amber - November 1, 1982 - 4 lbs. 7 ozs. 17" live birth (Chapter One)

Kristy - May 27, 1985 - 5 lbs. 2 ozs. 17" live birth

It's mind boggling though -

Kristy is the youngest - and now the tiniest of the two, but she weighed more at birth.

Amber is the oldest (of my live daughters) and a head taller than Kristy, but she was smaller at birth.

I have it now!!! Thanks, and before any of these darling girls..you had a son, who grew up to become Pebbles Flintstone's DAD!!!
One of the most incredulous things is the cause of their 'smallness' may not even be one of the long, medical terms that so easily roll off the R's tongues...and altho those seem known...yours have never been. At least with theirs, the condition has a name.
A friend and mentor of mine, who is quite elderly now, tells me that during the Gold Rush, her widowed gramma and small children were stranded in a town called Winnamucka...where one of those mines was going strong..so I like reading about that part of the world that I've never seen, too. (The dear lady pulled herself up by the bootstraps and began selling hot meals to miners...and died a millionairess on the California shore at a ripe old age!)

Yes, my oldest son has darling Pebbley-Poo Ally - it's moreso Pebbley when her hair is up on the top of her head - and my angel Jacob.

Little did I know that moving to Nevada would expose us to mine spill-off contaminants. Fortunately I lived in NV less than one year. But, when researching data for Chapter Two, I came across multiple websites about how severely contaminated the area around the Anaconda mine is. Horrendously toxic! I have a photo of my son, 1 year old then, looking at the deep hole (it was fenced). When I mapped the location, the mine looks to be filled with water now.

A second complication - or environment related exposure - was that our first home was located near the Fairchild semiconductor plant. It received so much press in the 80's because Fairchild had contaminated two or three wells which served the local community.

It was amazing to me that Fairchild received so much press, but IBM - which contaminated more than 16 wells - did not. Big company + big bucks = payoff to keep silent. IBM was, maybe, three miles north of the Fairchild plant.

All in all, our Fairchild exposure (4.5 years) was in the 80's, years after Nevada in 1978.

Where's Superfund when we need it????

Have you heard of primortial dwarfism (spelling may be wrong)? I recently watched a documentary on this and they are dwarfs who are smaller than other dwarfs, usually between 2-3 feet tall at their tallest. It is a very rare disorder that is produced by the combination of the genes as you described...one gene from the mom and one from the dad. There are currently only about 100 cases of it in the world and about 40 of those cases are in the USA. I have not gone to your website yet. I write this because I too have a daughter born with a rare genetic disorder "Incontinentia Pigmenti" (IP for short) of which there are about 195 cases in the world. I have always felt alone in dealing with it because I have never meet anyone else who has this or has a daughter with this. I say daughter because the disorder is fatal in boys and they usually don't survive until birth. I know how it is to have to deal with something that most people don't understand. Just as you can relate to issues of Dwarfism because there are some common issues there. With my daughters disorder it has caused her to have cerebral palsey, mental retardation, and other issues that I have in common with parents of other kids who have those issues, but there are issues my daughter has that go beyond that. So I know how it must be for you to deal with the other issues that other types of dwarfism don't address.

Hey I'm 35in long which is 2"11". I have McKusick syndrome, CHH and Achondroplasia.

dt15
I'm sorry if I offended you. I may have been incorrect in the height thing but I watched a documentary about Primordial Dwarfism that fits with all the characteristics that dlthomas describes in her girls. I also read on her site about her pregnancies and births etc which further support my idea that she may be dealing with Primordial Dwarfism which is a very rare form of Dwarfism. There are only about 100 cases world wide and only 40 in the USA. I was trying to help her find someone who can help her. Anyway, I emailed her with the website for it so she can at least have some direction for finding out what her daughters have and some doctors there who are researching this and will be able to tell her if this is the case with her daughters. I did not mean to offend anyone...my apologizies.

it's ok Chaseit. I had people say stuff like that. I'm use to it.

oh wait I forgive your apologizies.

did you know that in Florida I figure out my dwarfism by a doctor. Theirs good doctors over there. I was born in Chile and there the doctors couldn't figure out my dwarfism.

How long was it before you were properly diagnosed? I know the doctors in my area did not know about the genetic disorder my daughter was born with and all I had for years was a couple of pages the doctors in K.C. copied off for me to show to my doctors around here. That has been all I've known about her condition until recently. It is hard when even the doctors can't give you the answers you need. I read somewhere that there are like 200 different types of dwarfism. I'm not sure of that number but I think that is right. Is your type of dwarfism very rare? I don't know a lot about dwarfism so I don't know what the doctors consider to be "rare". Although I can't imagine how life is for you I can relate to the frustration of going through life feeling like there is nobody else like you who is close enough to meet or correspond with. I've been dealing with my daughters issues alone for thirty years.

From some of your posts I see you are able to talk to dlthomas' daughters. I wonder if you could just mention to them about the website on Primordial Dwarfism. I sure would like her to go there and read all the information about it and see what she thinks. the website is primordialdwarfism.com of course with the w's at the beginning. Perhaps you could go there and check it out too. I'd like to know what you think of it.
Thank you for accepting my apologizes...sometimes my words don't always come across the way I intend, but I never intend to offend anyone.

Hello ChaseIT... and dt15,

What great support you're offering dt15, ChaseIT. Thanks, again, for sending me the link to the P.D. website. I quickly reviewed it ~ so much to take in! Actually, one young woman profiled lives in my area. I met her and her family over 20 years ago. Seeing her stirred up my curiosity, as I haven't spoken with her or her mother in... several years and I need to get in touch with both. I'll email you soon!

dt15 ~ I hope you've been able to be on-line at the same time my daughters' are. It's kind of tough to time it just right. I know both girls look forward to chatting with you. The LPePals is the best site to chat, as you may already know. See ya there!

hey CaseIt, I don't know when I was properly diagnosed I know that was a long time. My type of dwarfism is very rare.

I HAVE HAD A PHOBIA OF SMALL PEOPLE(SMALLER THAN MYSELF) BUT WATCHING YOUR SHOW FROM BEGINNING TO END, I HAVE OVERCOME MY PHOBIA, I LOVE YOUR FAMILY, I NOW GO OUT OF MY WAY TO MEET "LITTLE" PEOPLE AND HAVE YOUR FAMILY TO THANK, THANK YOU ROL0FF FAMILY!!!!!

hey bo7 Your little too? me too. How tall are you? I'm 35in long which is 2"11".

dt15 ~ Kristy's waiting for you at the LPePal chat room. Thought I'd try to catch you here.

ok I'm going there.