does anyone know where u can get funds for surgeries on clef lip'n palate, cuz i need a few more but don't have insurance and ss won't help. if u can help plz...
Have you tried Hospital Charities? I think they may be able to help or March
of Dimes? I think they help as well. You may ask your doctor about that. Not...
Shawna, Hey are you also apart of the trach group? We have chatted before, I wasnt aware that our children have the same issues....its kind of nice to have...
No I am not in the trach group, pirre robin group though. Yes, it is nice to
be able to chat with others with babies with clefts and PRS. Mary has G Tube,...
Hello, sticklersyndrome member. This company really helped me out. I almost lost my home. I am self employed and I was able to refinance. The best interest...
Hello To All... I am going on NO mail since I am moving and then Mary will have her surgery. I will be back on as soon as I can. I will miss you all and hope...
Hello, sticklersyndrome member. This company really helped me out. I almost lost my home. I am self employed and I was able to refinance. The best interest...
Hello, sticklersyndrome member. This company really helped me out. I almost lost my home. I am self employed and I was able to refinance. The best interest...
Hi I am not sure what all the advertisments are from this group...but it wasnt what i was expecting when I signed up....is anyone else experiencing these? I...
I was think the same thing, Em Casie Caughlin <caughlin3@...> wrote:Hi I am not sure what all the advertisments are from this group...but it wasnt what i...
I am active on this list. I think what needs to be done is the moderator of the group needs to limit membership - a membership would need to be approved by...
I definatly agree to this, tese emails are really rediculous-hope we can all figure something out. Well how is everyones little guys? Mine is crazy...he took 3...
Sorry havent been on in a while..Son had his 6th eye surgery and we have been running since to the drs. twice a week..Things are looking better.Hope you are...
Hi my name is valerie and i as well as most of my family has sticklers but didnt know that there was a name for it till my daughter and son were diagnosed. I...
Dear Valerie, Welcome, I am pretty new too....I have a family history of Sticklers as well. But did know it until my son, almost 2 was born. He was diagnosed...
--Hi Valerie, Iam mom to a son with sticklers..I didnt know anything about it either til I went surfing the net and found all kinds of info..Even had to print...
i would love to talk some more, i also had to explain to some dr. what it is and what are some symptoms. if you have any good web sites i would be greatful . ...
Hi, my name is Andrea and my son was recently diagnosed with Stickler Syndrome as well. This was a huge shock to us because my little guy is almost 5 years...
... I know how ya feel..My son was 14 when he was diagnosed with Sticklers..He always has a problem with his eyes and we never thought much of it but he had a...
Hi Andrea. I was diagnosed with Stickler Syndrome about 25 yrs ago, I lost the sight in my right eye through a detachment when I was about nine. I just...
and it has been identified by a retina specialist....i had my daughter Sherezade tested for it when she was 3 years old...the geneticist said that the results...
... 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...
