... Hi, I know how ya feel..My son wasnt diognosed with sticklers til he was 15..he has lost most all sight in his left eye and has had 3 surgerys on his...
Hello Group, I am a mom of a 20 month old girl diagnosed at birth with cleft palate and later with Pierre Robin. It was a rocky road at first but is settling...
Hi there~ I am a mom to a 5 year old (as of Monday) who has PRS and had a trach for 14 months. We were able to avoid the g-tube thankfully. My son just had his...
Andrea My daughter has not been diagnosed but they are watching her closely. She is having hearing tests every 6 months and they are keeping up on her eyes...
I got this email from pat this morning and thought I would pass it on. I have emailed them and called them to tell them that I am interested, but havent heard...
Hi there, I am new to the group, and have an 18 week old daughter who has PRS. She was diagnosed within 20 mins. of her birth after she turned blue when they...
Hi There~ First of all welcome to the group. I am pretty new myself but will share my own experience with you and maybe it will be of some help. My son, Cale,...
Hi my name is Casie, I have sticklers as well as my son who also has PRS... welcome :) Have you looke dinto the PRN ? And the prs yahoo group, they are a...
Hi I am Casie, mommy to Skyler, I wanted to share with you the pictures I just added in the picture link...they are under Skyler C and Family. Hes my little...
First of all, Cassie, I just wanted to tell you that your little man is such a cutie! He looks like a big healthy boy! Did he ever have weight gain problems?...
Andrea, Thank you soo much. We are really proud of this little guy :) Yes they did lable him "failure to thrive" Even though he was 9 lbs when he was...
Hi group~ Well, once again, I am fairly new here but the vetrans of this group have made me feel so overly welcome here that I am now coming to you with a very...
I am so so sorry for what you are going through. I can understand why you waited. I felt the same about having another child but my clock was ticking too...
It was very interesting to read what you posted. I nearly lost both my children at 12 weeks, but fortunately with a lot of bed rest was able to continue...
Hi, everybody. This is my first visit to this group. I am Gerdine, 38 years old form the Netherlands. Today we visited the genetical expert at the hospital,...
Hi Simone~ It was so interesting hearing about your situation. You see with my family, there is no one who has Stickler's or any symptoms who have been related...
Hi, I've just been referred to a geneticist as possibly having Sticklers (26, bilateral retinal detachments and myopia, high tone hearing loss, congenital hip...
Hi All, Hope you and your familys are well..Just needed to talk..Son going for 8th surgery since last Aug.He has had retinal detatchments and now is dealing...
Hi all, Hope all is well with all your children. My son just had his 8th surgery on his eye(retnal detatchments and glaucoma) and is doing ok..Going in Dec. to...
Hey guys, I hope you all are doing good, we are doing ok. SKyler is battling a cold right now, I thought we were almost done, but it "flared" up again this...
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... group ... you ... Hi! I am new here. My name is Heather & I along with my two daughters have stickler-syndrome. We just found out a little over a year...
Heather, Wow, nice to meet you...Sounds like you are doing well. I have a son, Skyler he is just over 27months old now, he has sticklers and prs...with the...
Hello My name Is Charlene. I am married and have 3 kids. My oldest who is now 15, Danielle), was born with a cleft palate and lip. She is doing well now. I...
Welcome Charlene.. I am Shauna.. I am 28 yrs old and I have Sticklers. I was born with no nose bridge and so therefore i have the "flat face" (trust me kids...
Hi Charlene, Iam Charlene also.My 16 yr old son has sticklers.He is most affected in his eyes.He is going for his 9th operation in a couple weeks.(retna ...
--Hello, thank you for the welcome. I guess I didn't realize that this syndrome, could affect your eyes. i guess my daughter had a mild case, just one side of...
Hi again Charlene, Yes this syndrom can affect all the conecting tissues.(heart,joints,eyes} doesnt affect everyone the same. What was the surgery your...
