Hi Casie! Well my story is long. We had no idea that any genetic disorders
ran in our family. When Kayla was born she had the cleft-palate, but that is
all they thought was wrong. Then I had our 2nd daughter & she had the
cleft-palate with the Pierre-Robin syndrome. Of course at that point I wanted
to no why this kept happening. They still said they thought it was a fluke, or
something that happened when my husband & I genes came together. Finally at a
cleft-palate appointment 2 years ago a genetist started putting the pieces
together. I am severely nearsighted & now have arthritis. They always said my
eyesight was a result of being born 7 weeks early. Wrong. I have had 6 retinal
detachments. Things have been good with my eyes for the last couple of years.
So we just found out about the syndrome 2 years ago. My mom came back positive
a couple of months ago. She just started having some symptoms. Arthtitis,
astigmatism, & chronic muscle pain. She has always been
double jointed. Both of my girls are nearsighted. Nothing like me thank god.
The optometrist said Paiges eyes look favorable for retinal detachments.
Something about the gel being off of the retina & floating in the eye. She has
a lot of floaters. Her eyesight is worse than Kaylas. Now Kayla is only a
little bit nearsighted & they say her eyes look good in the back. She gets sick
a lot though. She also has chronic ear infections. Still waiting for her to
outgrow those. Paige never seems to get the ear infections. My third daughter
Ashton is fine. Thank god. I really wanted another baby after Kayla & Paige.
Everyone thought I was crazy. She will be 6 Feb 20th. She has nothing wrong.
I guess it is a 50/50 chance of passing it along. I just prayed from the time I
started trying until she was born. I had the church & everyone in on it.
Except my mom. Didn't even tell her until I was 5 months pregnant. So glad to
have had one I got to bring home right away & hold.
Kayla was only 2 weeks old when she came home. Paige was 2 months. We also
had nurses with us at first 12 hrs a day. It slowly got cut back. She had them
until she was almost 5. Hope everything goes well with Skyler. You will be
suprised at all the words he can say when his trach does come out. Sorry to
hear it is so cold there. It is about 50 here. It is cold & snowy in Ohio
though. Which I am going back to this summer. Would also love to get to no you
& your family better. Hope to hear from you soon.



Heather mom to 2
stickler-syndrome girls Kayla & Paige





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