My name is Paige and i am now 23 years old. i was born with PRS. my mum wasnt informed of what i had until about a week later. i was kept in hospital for a few weeks and then sent home. about two weeks later i was rushed back to hospital cause i lost too much weight due to not feeding properly. doctors put a NGT in to feed me. they also spoke to mum and dad about putting in a trachey. but mum and dad refused because they found the nurses werent trying to feed me properly. so everyday for a entire month mum and dad came in to the hospital to bottle feed me. i would fall asleep during a feed but they would keep waking me until i had finished the bottle. i finally put on weight then NGT was removed and i was sent home a month later. i had my cleft palate repaired and have never looked back.
through my younger years mum and dad have taken me to speech therapy and sat on the floor for ages practising pronouncing words properly.
i had a turned in leg so mum and dad massaged it for hours each day to get it to turn out. it finally paid off.
i then had grommets put in and my hearing improved greatly.
i also had high myopia (extremely short vision) and prone to retinal attachment. mum and dad refused to let me wear coke bottle style glasses so i was given contacts in year one of school. mum always remember the moment when i said geez you look big...lol. contacts made my vision so much better than what glasses could do. i was never allowed to play footy or any real contact sports as i was prone to retinal attachment (could go blind) if hit on the head hard.
through out school i had intergration aids due to my vision impairment.
At 16 years the big day came were i went to the optometrists to find out whether i would be allowed to drive with my vision.... came out with a big smile. i was allowed to drive but only wearing my contacts in. i was told to only drive within my limits. so try and only drive during light hours and places i knew.
i passed my learners test with flying colours and started driving.
at eighteen i got my full licence and my independence.
i went on to tafe and do my div 2 nursing course. and my disability course.
i know work at a special school helping others get some independence and also enjoy the things in life we take for granted.
i alsways thought i had problems but some of the children at the school i work at have alot more than i could of ever imagined.
well that is a little about myself and i hope you all can have some positive outcome like i did.
Hi Paige I also was born with PRS 33 years ago, my little girl also has PRS. We both wear glasses for short sighteness with the high risk of retina detachment.
My question is how did you find wearing contacts so early? I didn't start until I was 13 but stopped during pregnancy due to my sight changing.
I am starting to consider contacts for my little girl but keep thinking it might be too early. Her glasses aren't that thick and thankfully the in fashion at the moment in glasses is big thick bulky plastic frames. So no coke bottle glasses for her like I worn all those years.
i would recommended getting her in to contacts as ealier as possible as i found that my sight was so much better. then in the long run she can chose what she wants but at least she has experienced both.
Hi Paige, It was great to read your story. Thankyou so much for sharing it!! I hadn't even heard of Pierre Robin Sequence until my son was born. It was lovely to read your story and know that he can be happy and do things like everyone else!! Thanks again
It was fantastic to read a little about your life, and to see that there is light at the end of the tunnel. To know that you have acheived so much in your life, lets me know that my son Harrison will be able to acheive anything that he dreams of doing.
