Eun's son's petition - Please sign - Fight for respite

[Lazydaisy]

I wish we had been able to get more signatures Eun. I shared it several times on my Facebook page,and explained a bit about what it was about. Most of the friends who shared it on were my friends from here. My husband and daughter also shared it,but I don't think anyone else did.

[Myrtle]

I shared it on facebook too and I also asked those on my e-mail but not facebook friends. Sorry it hasn't made more signatures.

[Eun]

Don't worry Myrtle and Lazydaisy - its now at 775 - we'll get there. Thanks for all your help.

Eun

[no1mum]

I've been bumping it up on facebook as well, did get a few signatures and shares but not as many as I'd hoped.

[Eun]

Now up to 848 signatures on the petition. The Young Adult Council had a meeting with the PR officer of the Children's Hospice Association who is giving them advice on getting a campaign going to try and get a hospice built but it seems to be the usual strategy of piling all the work onto one person (my son) and I told them that I didn't think it was fair for it to be expected that just one or two people should do this alone.

In his last year of Uni he was having nosebleeds etc with the stress of it all and his health is worse now - I don't want him to get stressed out but he says he will be sensible and only take on what he thinks he can manage.

But on top of all this one of the MD charities are setting up a mentoring system whereby young men with DMD like my son can mentor someone much younger to advise them on how to cope with life etc and he'll be going to meetings about that as he wants to volunteer as a mentor.

I know he is a grown man but there are times I would like to put him in a big cotton wool lined cardboard box and just take him out to look at now and again so that he doesn't get broken lol. I know for certain he would not want to be fussed over but I don't want him to get ill again. The pneumonia last year scared the cr*p out of his dad and I.

Eun

[Lazydaisy]

Eun, whatever happens in the future,you will always be able to be proud that Rob has fought so hard,not just for himself but for others.He would not have achieved as much as he has without the help,support and encouragement(and the sheer bl**dymindedness needed to cope with the powers-that-be).
Parents are the one who live with the heartbreak of watching our children struggle,we are the ones who have to grin and bear the heavy load;you and your husband have a difficult 24/7 physical job as well as all the emotions that come with your son's condition.
I know the feeling about wanting to wrap your child in cotton wool too!

[Eun]

Yay Petition up to 1000 now

Eun

[Myrtle]

[rosemary]

well done. Shared via twitter again

x

[Eun]

Good news all - Robert got an email from the Muscular Dystrophy Campaign in Scotland. They are going to take up the gauntlet of trying to get hospice/respite facilities for those aged 21 -45 and to raise awareness of the abandonment of those aged over 21 with terminal conditions that aren't cancer so Robert and his friends are no longer fighting this battle alone! Hopefully this will put fresh momentum into Robert's petition which currently stands at 1103 signatures.

Eun