Hello! I am so glad I found this group. My name is Joni and I have a
two year old and a 6 month old. My husband, sister-in-law and mother-
in-law have sticklers syndrome. My 6 month old also has sticklers and
mild prs. My two year old is unaffected!
All of the affected adults are blind in one eye due to retinal
detachment. My husband seems to be the only one with hearing loss and
arthritis. Evan (my little one) has been in glasses since he was 2
months old. He has not had a trach or feeding tube. We had a rough
beginning but are doing great now. He is breathing so good at night
now that I still get nervous that I can not hear him breath down the
hallway! He will have his palate surgery in two weeks. I would love
some input on what to expect. Also, any information on adults and
arthritis would be great also. My husband has been in a lot of pain
lately and we can not seem to control it. He is 31 and cannot climb
stairs or a ladder. Any info would be great!
Joni