Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

22 March 2010

Don't worry...

I'm not gone... I've just been busy with my crafty things! The nerve centre has given me inspiration to paint and do lots more arty and crafty things! They also do exercise such as tai chi or games afternoons! I haven't been to tai chi or the games afternoons yet but im sure i will one day. They hope to get more people with neurological disorders to come to the nerve centre and to buy more art supplies and to pay for advertising because most people don't know they are there! it's a good place for neurological disorders to go to because they can get out of the house for a while and meet other people with same conditions. I've just been busy painting and all sorts..
The Newcastle visit to hospital is coming up soon so get that out the way! For now i'll nurse my sore throat that i caught off my dad! :P

17 March 2010


We had a power cut last night at 1 30am (dont ask why i was up late i should have been in bed!) I was in the bath room and everything just went black! Lucky I had my cochlear implant on at the time as it would have been a lot scarier without! I felt and followed brother's voice to his room where he gave me a torch!
Checked outside and all the street lights were out, only our street though.
It only lasted about 45 mins but im certainly glad i had my cochlear implant to rely on!

13 March 2010

To my Mum...

Who has been through everything medical with me and been there through the HIGH and the lows of my cochlear and mitochondrial medical journey. She cheered me up when I was down and we laughed at the funny times. I'm very thankful she's there and I don't know what id do without her. So to show you how much you mean to me Mum I made this for you I hope you have a WONDERFUL Mothers Day! Love you lots! xxxxxxxx

1 March 2010

Rare Disease Day...

One of my cochlear implanted friends, Vivie came across a blog that alerted her about rare disease day. which is 28th Feb. She told me about it since I have a rare disease too. Mitochondrial disease isn't necessarily rare but Multiple mitochondrial conditions are such as my condition Multiple Mitochondrial DNA deletions is rare and even rarer in my people my age. It switched off my hearing at the age of 8, I've never been able to move my eyeballs to look up, I have droopy eyelids and affects my swallowing resulting in using a button PEG. I may be able to eat some foods normally but I rely on the PEG to keep my weight up. It affects all my muscles by not giving them enough energy so I get tired more easily. Doctors aren't really sure how my Mitochondrial disease works therefore I go yearly tests such as blood tests and ECGs at Newcastle to monitor how it progresses as I get older.