2nd June 1986: The day I was
born. My mum and dad didn't know about my illness yet.
1987: My teeth were coming through a different
colour and I was getting blisters. My mum and dad took me to the doctors. They
gave me different medication, mainly for chickenpox. At 10 Month old. My mum and
dad took me into hospital. A doctor who saw me for the first time recognised my
symptoms as a rare illness. Tests were taken and after 6 weeks in isolation I
was diagnosed with
Congenital Erythropoietic Porphyria. All my mum was told was
to keep me out of the sun. I'd have an enlarged spleen and liver and I would
probably live to be 10 years old.
1990: I was currently only having sun cream as a
treatment. When I went on holiday in July, I fell ill and had to be taken into
hospital. I had had too much exposure to the sun. At this age I didn't know much
except the sun-light burnt me. My mum and Dad had to stay indoors with me. I had
my first blood transfusion.
1991: Before I started school the doctors decided
that I could benefit socially from having a porcelain coating on my
front teeth to make them look white. As this was on my milk teeth
eventually they were replaced by my adult teeth.
1992 - 1994: I broke my legs several times between
these years. I was diagnosed with Osteoporosis. I had also started to have blood
transfusions every 6 weeks now.
1997: I went into hospital for two weeks because
something was wrong with my liver. after having a biopsy I found out that I had
nephrotic syndrome which is a lack of protein. I had to have special energy food
and drinks.
12th October 1998: I started seeing a new doctor
called Sally Kinsey. She and I thought it was best if I had a
Hickman Line put
in my chest. This is a small tube that connects to the vain in my neck so that
when they take and give blood, they don't have to insert a canuler into my skin.
With this on, I could have a medication called
Desferrioxamine which would
reduce the amount of Iron in my body. I also had this done to make it easier
when I have my Bone Marrow Transplant.
16th March 1999: I went into hospital for two months to
have my Bone Marrow Transplant. I had chemotherapy and then I had my Bone Marrow
which was donated by my sister Haley. I stayed in quarantine until the end of
May.
2nd June 1999: I celebrated my Thirteenth birthday
at Skipsea. I could only go for a day because I was still having tablets to
recover from my Bone Marrow Transplant.
October 1999: The bone marrow transplant had
failed. but it did cure me of my
nephrotic syndrome. I wasn't bothered, as I
said in my diary I like having something special about me. I had gone back to
school in September. A lot of things had changed and it was hard to get back
into a routine. I was having my Transfusions about every month now. I auditioned
for a play that will be performed at the Millennium Dome and I got chosen. A
charity company paid for me and my family to see Steps in concert and I actually
got to meet them. They were very nice.
May 2000: After getting bullied at school. My mum
decided to take me out and I went to an acting school that my friends from the
'Our Town' Millennium Dome Production go to. I went to Skipsea in May but I had
a Five hour nosebleed and I had to be taken to a hospital in Hull. It didn't
ruin my holiday though. My longest ever nosebleed was Seven hours. I was having
transfusions about every three weeks and I continued to have the Desferrioxamine
every week.
September 2000: I had my nose cauterised to prevent
me from having nosebleeds. This worked for about two months!
November 2000: I had started to get very sharp
pains in my back. These got really bad. I had to take
Dihydrocodeine.
December 2000: Over winter the pain got worse. I
couldn't deal with it and went into depression. I had stopped going to school
because I couldn't even walk upstairs. My mum and Steve really helped me get
through it.
March 2001: After seeing a bone specialist, I found
out the Osteoporosis had spread to my spine. Luckily there was a medication
called Permidrinate which I had over three days every three months. This helped
the pain go away. I started school again and my life was back on track.
April 2001: Went to Sheffield to have a bone biopsy. I started my Permidrinate.
September 2001: My mum and Steve got married on the
15th. The 9/11 terrorist attacks really effected me. I couldn't believe that
there was that much evil in the world.
Dec 2001: Extract from my Diary: (Dedicated to the
visitors of Amanda Bynes
UK)
Have I told you about a girl named Amanda Bynes? She's the
funniest, prettiest and best damn actress around. And the best bit? She's 15!
She was born on April 3rd and likes No Doubt. I found this out at an official
website, with updates from herself. I emailed her today but I'm not very good
with e-mail. I hope I'll meet her one day or at least get in contact with her.
May 2002: I fall ill with an infection in my Hickman
Line. I stay in hospital for a week. I am also taking my GCSE's at the same
time.
August 2002: I fall ill again only this time I am
rushed into intensive care. My line is removed but it takes a while for me to
recover. Whilst I have my infection I also get pneumonia. I receive my GCSE
results whilst in intensive care. I got two B's and three C's. I also got a D,
three E's and an F.
Sept/Oct 2002: I get a new Hickman line put in. My
Transfusions are as close together as two weeks now. I have to take antibiotics
because I get a cold and my blood count gets low. I start 6th Form and I get a
home PC.
--2003 Archives--
Wednesday 19 March: The day I
created this website. Today I felt tired at school but eventually picked up.
Usually on a morning I don't have to go in until 10am but today was different.
Tuesday 25 March: I went to the hospital today.
I've corrected some of my spelling mistakes. Thanks for visiting.
Wednesday 2 April: I had 2 appointments at the
hospital so I could not stay to find out my Stats. I took a day off from school
today because I was feeling tired. I had a Blood Transfusion last Friday.
Tuesday 8 April: There's a new pictures section
showing my trip away with my Media class. I'll put up some more pictures soon!
Thursday 17 April: I had to have a big transfusion
this week. I'm feeling quite tired. I'll be on holiday in Skipsea from Saturday.
Hope you liked the pictures.
Tuesday 6 May: I've updated. Feeling tired. I had a
good time at Skipsea. Got my A Levels soon. Wish me Luck!
Friday 30 May: Wednesday, Thursday & Friday I had my Permidrinate and I will be
having a transfusion on Monday. Yes it's my birthday too! I've got a shiny,
brand spanking new laptop! Joy!!! Oh and the best way to wish me a Happy
Birthday is by signing my guestbook!
Tuesday 1 July: OMG! I have a job. It's going to
during the summer holidays. I did the radio station today and I'll be doing it
again tomorrow with Jenny and Emma. Transfusion on Thursday because I'm going
bowling with my form class Friday. Sorry for the lack of updates!
July/September 2003: I finish up Year 12 at Sixth Form and begin my work
experience at a Web and Graphic Design Company. In August I get my A/S Level
Results. Film Studies: A; Media Studies: D; General Studies: U. I'm happy about
my A and D and my U doesn't really bother as General Studies was the worst
lesson ever. DON'T TAKE IT!! I go on antibiotics because I get 2 infections in
my left index finger. My finger is diagnosed with Osteo-Mialitus. In September
it's full steam ahead as I start Year 13. I'm of school Week Commencing 29
September because of cold. Convert Today
over to Blogger so I can
update more frequently.
Any Further Questions? E-mail me.