Hi My daughter and I both have Sticklers and PRS. Victoria is 6 years old. Because of the Sticklers, there was 50% chance of her inheriting both Sticklers and PRS.
Way back when I was a baby, I spent 13 weeks in hospital and had a tongue lip adhesion done which was released when I had my cleft palate repaired at 13 months old.
Times have changed so much, Victoria only spent 5 weeks in neonates and came home with a nasal pharanygeal tube (I have never learnt to spell that). She had the NP until she was 5 months old and her palate was repaired at 10 months old.
Her speech is fantastic, however her ears are not the best. She has had 5 sets of grommets and recently was diagnosed with mild hearing loss in both ears. In a couple of weeks, she will have her first assessment with Australian Hearing.
We both of course have the normal and its normal for us, Sticklers issues, we both have glasses. I am going onto the waiting list for a hip replacemnt, whereas Victoria's joints look good at this stage.
For me PRS and Stickler's are just us, my mother and brother also have both. I also have a 14 month old niece who has Stickler's and had a jaw distraction in Feb. I am not sure whether the doctors have diagnosed PRS in her case. She doesn't have any cleft palate issues which is fantastic.
I look forward to meeting others raising a child with PRS.
My husband and i are the founders of this support group and get excited every time we meet a new family with PRS. Please drop me an email at info@pierrerobin.org.au or complete the membership application availiable online so i can add your details to our group databse. This way we can get you involved and hopefully meet up with you soon.
