translate

Wednesday, 20 January 2016

RP CAGED


Hey Bloggets. I’m pleased to say that our canary, Irish you know? Is at least alive. He is very quiet but at least he is flying around. The cage he is in is huge. Three times bigger than the smallest ones you can get. I don’t like caged animals, birds have wings to fly, but my Son really wanted a bird we said no, then Mr. Clock bought him one for his birthday many years ago. The bird he bought, Jeffers. Yep, odd name I know for a canary, as is Dean the current one we have now. Jeffers was not an Irish canary, I can’t remember what he was but as Olga said in her Russian accent, when she visited.

“Goo’oo’oo’oodness, Eet eez a cheeken.”

 And he was the size of a chicken. Only thing is, he wasn’t a he, so never sang. Sadly he died. He/she was only a year and a half some people said when the females have eggs they can get stuck. It was said to me that I should try to unstick.

 Em.

 No. Not happening.

 

So teen was still a young teen we bought him another canary. This time an Irish one as we were told if they were boys they would sing so sweetly. We got him when he was a baby so how to know he was a boy? The breeder said he was… But you don’t really know with birds until they are about one year old. We waited until he was a year and he did sing so sweetly. He is about five now. Gosh, where has the time gone?

 

Anyway Teen said he is looking great. The canary that is not teen, though I’m sure if you asked my Son is he looking great, he would answer yes….

 

Talking of Teen he has just come back from the gym.   Now washing his car then after a shower he will go to visit a friend they are having lunch.

 

The weather today is really sunny it’s a beautiful day. Fresh and spring like!

 

I have a duster with my name on it. Also got to clean the windows upstairs. Don’t panic, from the inside not the out. Our outside only gets done when our window cleaners either run out of beer money or come out of jail. I have not found out what yet. They come about every six months. In the summer I do the outside ones myself but my hands will freeze in winter and stick to the glass. Smile.

 

Oh heck. Teen cleaning car with his awful music blasting. Our avenue from the front is so quiet, the back is like a motorway but the front is peaceful. Until a Teen cleans his car.

 

Waggatail is playing with a huu’uuge toy Hub got from work from a colleague. It’s an octopus. It is enormous. Half the size of a Waggatail. She loves it. As does the Little Fella. But we can only let them have it for a while or they start to think it is roadkill. Talking of that, poor animals getting killed. My brother in law who I love to bits annoyed me yesterday. He does it deliberately. He is hunting innocent animals right now in Scotland. He boasted rather repulsively he has killed 125 rabbits and 32 geese. And what does he want from me for that? I sent him a text and wanted so badly to say so much more but Hub told me off and said just drop it. It sickens me. At least when he goes to Australia he will be leaving our beautiful creatures alone. Sorry for Au though.

 

He is such a good brother in law, or normally I would not be able to have anything to do with him I just feel sad that he can do this with pride. And he is so mischievous telling me of his murders knowing how I feel. Why would you do this? If my heaven is what I hope it will be, I feel sad my brother in law won’t be joining me when it’s his turn. Each time I feel so sad because he is abroad so far away, and I will miss him, I will just remember his texts of tails of torture.

 

I want to end this blog on a positive note. So here we go. For those with RP, the eye condition I have latest news is as follows. When it comes to research, moving a treatment from the lab to a clinical trial is challenging; requiring significant financial resources and drug development knowledge.  But advancing a theory to this critical stage also brings it much closer to the people with retinal diseases that desperately need it.

 

These trials only happen because of the time, money and expertise by funding.

 

Funding has been raised to launch a clinical trial of its ontogenetic gene therapy.  By harnessing surviving cells in the retainer, the treatment holds promise for restoring some vision for some people who are completely blind, regardless to the gene mutation causing their blindness.

 

There is a breed of dog that has the canine version of our eye disease and a stage two therapy has restored vision in the dogs that were blind with this x linked related RP. The buzz on the net is the light sensing retinal cells, from cells that do not normally react to light. This research is in its earliest stage and has been conducted in the lab so far. But it sounds promising. I think if all goes right, in five years’ time, we will be seeing at least light. I doubt in my lifetime in my forties, I will ever see as a sighted person, everything is so slow, it’s down to money first secondly an understanding Government and thirdly the knowledge of people power. I just wish that all scientists around the world would work together. But it’s a race. And perhaps that is what it will take to inspire scientists? In that case let them spend time with real people who suffer with RP? Those who can’t get out of bed in the mornings with deep depression. Those who live in fear of losing their eyesight. Those who are new parents who have just been told that their child has this what can be crippling disease.  Those who don’t have holidays, or have great family days out and for those who simply want to end their lives. Sadly the scientists see those who are out there, those who are what I call the super blind. Those who have moved on and learned to adjust and thank God for people like them. As they are the guys who are knocking on doors for those who just can’t. But happy words happy faces aren’t going to bite at the hearts of scientists. We are just a test tube. We need to be real. Then who knows things may progress with speed.

 

New research from the United Kingdom has demonstrated that stem cells found in the cornea could provide a source             of photoreceptor cells for transplant in those with degenerative retinal conditions such as RP     but again early stages and won’t start human trials until 2020. Lets hope something much bigger will come before then. But things are moving in the right direction, just very slowly.


“Don’t be discouraged its oftern the last key in the bunch that opens the door.”



 

Fiona Cummings

No comments: