Hello, My name Is Robyn Smith!  Im almost 16 years old.  I live with my mum (Sara), step dad, and 3 sisters aged 13 and 9 and 7 months, and a little brother aged 4 years!  My mum gave birth to me at 37 weeks (she was just 17 at the time), I weighed in at 4lb.  I had lots of trouble feeding when I was born so a tube was put into my nose so I could be fed that way.  After a week spent in hospital i was allowed to come home.  i was born with ptosis of the eyes which ment my eyelids couldn't fully open.  I've had lost of surgery on my eyelids which means they are both now open, I am unable to close them now though even when im sleeping, so mum has to put special drops in my eyes lots of times during the night (this stops my eyes from drying out.) 

At 4 months of age my mum noticed that I wasnt gaining weight properly, also I wasnt doing things that other 4 month olds were doing.  So my mum took me back to the hospital where she got told that I had brain damage.  I had lots of different test done like MRI scans, lumbar puncture, loads of blood tests, I even had the tips of my chromosomes tested from a peice of skin they took from behind my ear.  They all came back normal.  This made things very hard for my mum and very confusing.  Im almost 13 now and still dont have a diagnosis.

I am unable to walk, talk, feed myself and eat.  Im on a liquid diet and my mum feeds me every 2 1/2 hours 5 times a day.  I dont show when im hungry and im often sick.  This is because my tummy has pushed its way into my oesophagus, its very very painfull for me to drink and i have to have a big operation to correct it called a fundoplication.  And im also going to be having a gastrostomy done, which means i will be fed by a tube going straight into my tummy.  Im used to being in hospital now because ive had lots of epileptic fits and lots of operations.  One of my operations i had was to fix my hip which had come out of its socket.  I was very poorly after the operation and had to have 2 blood transfusions.  I was put in a hip spica cast which went from right under my armpits all the way down to my ankles and i had a wooden rod holding my legs apart.  I had to have that on for over 3 months.  I really didn't like laying on my back for that long.

My mum is setting this page up for me so i can get help with the equipment i really need.  I used to love going down the beach but havnt been able to go for years now because my wheelchair wont go on the sand.  So one of the first things i want to buy is a sand buggie!  I will be able to join my sisters and brother down the beach and even get my legs wet!  I would also like a sensory corner in my room, this will help me to relax and stop me from biting myself and pulling my hair.  If i could talk and express myself i would love to let people know how hard life has been and still is.  I see my sisters runing around and i get very upset and frustrated that i can't do that.  I know that because of all your help i will be able to do things and experience things I thought I might never be able to again.

 

Thank you for taking your time to read my story!  

 

                                         Robyn

I also have a Face Book page called Robyn Fund Trust, you can find pictures and updates on my progress. x