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Messages - ziggysego

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1
Thank you everyone,  you really are the best. I might not be posting as regularly as I used to, but I'm in lurking around most days.

Thanks again everyone. :)

2
Thank you everyone. You're all great.

Agreed! Good man Ziggy!

On another note did you see much of Omagh laughs back? Any good acts?

I was out every night at it sir, had great craic.

https://www.youtube.com/watch?v=xD7ZweqDXC0

3
Cheers everyone,. Including RLL, all appreciated. I'll keep at it.

PS Greencastle were All Ireland JC Champions 2007

4
Wow, thank you guys. I really appreciate your comments, genuinely means the world to me. Love you guys too. It's going to be a hard fight, but I'm going to take it as far as I can.

As for the rest of you who are wondering what this is about....

http://ulsterherald.com/2015/06/25/rare-condition-sufferer-pleads-for-access-to-vital-drug/

5
General discussion / Re: My Way Access
« on: June 23, 2015, 11:58:43 PM »
A follow up open letter for David Cameron from a friend of mine's in Bath, England who also has Morquio.

She is 8-9 years older than me and was on the trial. You can clearly see from her letter what she was like before the treatment, the difference the treatment as made to her and what will happen when it stops tomorrow.

http://www.mywayaccess.com/blog/sarah-longs-open-letter-to-british-prime-minister-david-cameron/

6
General discussion / Re: My Way Access
« on: June 23, 2015, 11:56:41 PM »
I dip in and out of this site and only saw the link to MyWayAccess today. I've passed it on to a pal with a disability. How's the routine going, btw?

Hanging in there mate.

7
General discussion / Re: Hayfever
« on: June 22, 2015, 12:43:03 PM »
My left eye has been buggared since Saturday.

This year it's my right eye since Saturday

8
General discussion / Re: My Way Access
« on: June 18, 2015, 10:18:06 AM »
Breaks my heart to know there's treatment out there, but they won't funding it.

Very few of us with Morquio back in the 70s and 80s would be lucky to make it past their 20s. I had surgery on the base of my skulls in the early 90s, which helped in that respect.

http://www.boneandjoint.org.uk/highwire/filestream/15690/field_highwire_article_pdf/0/307.full-text.pdf

Apparently there's a picture of me floating about of me in one of these documents. I've yet to find it  :D :D

9
General discussion / Re: My Way Access
« on: June 17, 2015, 04:54:47 PM »
Thanks Hereiam, bad timing but hopefully one or two will see sense and pick up on this.

Sorry to hear about your brothers, I didn't know of this before.

10
General discussion / Re: My Way Access
« on: June 17, 2015, 10:14:00 AM »
Thanks for all the kinds everyone. As you can imagine, it's a quite stressful and trying time for me. Don't even get to as many club and county football matches as I once was able to attend.

I'm hoping to get a few replies and maybe, at least one, take up the challenge and help me get Vimizim here.

11
General discussion / Re: My Way Access
« on: June 16, 2015, 03:57:29 PM »
Hi all

The open letter that I posted out to all the MPs in this part of the world today, asking them to apply whatever pressure they can on NICE and NHS England to approve Vimizim for MPS Morquio.

Apologises it's the letter is a little emotional in parts, but I had to be honest and truthful.

I ask each and everyone to please get behind this wider campaign. #Fight4Treatment

http://www.mywayaccess.com/blog/open-letter-to-get-vimizim-approved-for-mps-morquio/

12
General discussion / Re: Death Notices
« on: June 11, 2015, 12:40:29 PM »
Christopher Lee RIP  :'(

13
General discussion / Re: Dogs
« on: June 11, 2015, 12:46:47 AM »
I've this wee dog now over a year. She's 4 and I got her from an animal rescue centre in Tyrone - Grovehill. She's a crossbreed Jack Russell.

https://www.youtube.com/watch?v=B56LgOGIAJA

14
Seasick Steve - Prospect Lane

https://youtu.be/mqDGXDpxtyk

15
General discussion / Re: Can you believe it?
« on: June 04, 2015, 11:18:30 AM »
I hate these click bait subject titles.

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