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

11 April 2014

Check out @4Lilyfoundation's Tweet: https://twitter.com/4Lilyfoundation/status/454672463524548609
Check out @4Lilyfoundation's Tweet: https://twitter.com/4Lilyfoundation/status/454671985982062593

Please donate don't let any kiddies die from.this horrible disease!!!

Check out @WilsonsSchool's Tweet: https://twitter.com/WilsonsSchool/status/454589948809601025

Please donate as much as you can! It really is appreciated!!

Check out The Lily Foundation (@4Lilyfoundation): https://twitter.com/4Lilyfoundation


Check out The Lily Foundation (@4Lilyfoundation): https://twitter.com/4Lilyfoundation

8 April 2014

PEG nurse...

my peg nurse came this morning 
all was good and well apart from a couple of granulates that started to bleed when the button came out but she was happy with it. she put the new button in and gave it a clean and we explained about our progress on the eating and weight front which is good as she said as im not taking any more feeds with the pump since last year now i dont need to see her for another 4 months! 



since a lot of people dont know about mitochondrial disease i have set up  mito adult support group and a mito a
wareness page on social media facebook! 
the above link is for the mito awareness page link if you can share it about if you can we need to get the info out about mito disease and how it affects us 
it is as wide spread as cancer and no one has ever heard of it and its researches and everyone i talk to always asks whats that? i explain about it and they have their opinion on it but each to their own!  maybe they wont care maybe they will but at least they know about it! 

6 April 2014

PEG nurse tomrw...

PEG nurse coming tomrw at home she comes every 3 months i think she will be pleasantly surprised at how im keeping my weight on without the help of the feeds - that reminds me must put water through my tube! i should do it every day! oops and my mum and me forgot my depression pill for 2 days running as we were so busy with things uh oh  i think thats the reason why ive got a bit weaker in my knees and my neck :S my neck is very floppy these last few days due to the fact its weak oh well another symptom to tell doc turnbull lol but i think it was coz of the meds really i felt a bit fuzzy the last 2 days so i  really should take better care of myself when night time comes meaning go to bed early! im not a teenager any more when i could handle staying up all night and still be ok the next day but i  know when i am defeated and have to rest eventually!

Its my carer Victoria's last day looking after me on Tuesday so will be sad but i dont want to stand in the way of her promotion she deserves it! and we will stay friends :)

Been busy setting up a mito support group and also mito support page on facebook look for us if you have any Questions about mitochondrial disease with help from co admins susan warnock claire younger. hopefully we can get awareness out there for mitochondria disease and educate people on it! 

Next trip to newcastle for me is in 2 weeks time hopefully all will be good news!

3 April 2014

neck muscles...

the last few days have been crappy for me as im so tired i cant even keep my head up i go to bed about 11/12pm and i wake up around 6 or 7 now ive come off the meds that hep me sleep longer.. newcastle soon though i can ask prof turnbull about it