Welcome to Raffy's Trust.org!

This is our little boy Raffy, as you can see he is drop dead gorgeous but he has some very serious difficulties in life.
Please take a few minutes to read the info and have a browse of the Son-Rise® link.
Thanks, Bri & Ruth

Friday 30 April 2010

Not Now and lots of thanks

Thank you to everyone that came to the private view on Wednesday night. Lots of people arrived, looked, drank vino, ate cake, saw performances and film. I had a very nice time and the knitting seemed to go down well. My mum and dad babysat with only one small episode later on. No one was hospitalised so we saw it as a huge success!
Phew. Just now feeling absolutely shattered. The show is open until Sunday 9th May so if you are in London, please have a mooch over to Highgate Hill and have a look. Waterlow Park is lovely and there's a cafe in Lauderdale House (apart from Mondays).
Raffy & Eden enjoyed seeing Nanna and Grandad. Raffy coped very well with having other people around all day and in his own particular way was quite sociable. He even followed Nanna out in to the garden on Wednesday to talk shapes!

Had some brilliant donations as well from Judith & Andy, Caro, Kate, Vera, Mal & Gill, Les & Alison, Tim & Adam, Nanna & Grandad, Lesley, Karen & Mike, Auntie Doris & Bill, Sharon & Mia, Juliet & friends (again), Rebecca and Louise.... thank you all so much, we love you xxxxx

Monday 26 April 2010

Not Now... exhib started!

Just hung the show at Lauderdale House on Highgate Hill.
My knitted portraits are on the stairwell at the entrance to the show (upper gallery).
24 toiled over pieces!

Good old Bri spent a large amount of time up a wobbly stepladder doing impressive knotty things to get them all up. It took a long time.

Raffy & Eden were at Auntie Phyls who managed to feed/water/entertain them for over 6 hours! Thanks Phyl!
Raffy is now eating yoghurt and trying to avoid the dreaded bedtime.
Here's a taster of the knitting... will post a picture of the whole installation after the PV.
So if you want to see it all you have to come to the private view on Wed 8-10pm!

Each piece is for sale, all proceeds to Raffy's Son-Rise® adventure.

Wednesday 21 April 2010

Thank you!

Nykki has raised well over £350 running the marathon with a good chunk of this coming from Juliet and friends, so a huge thank you to Nykki, Laurie, Juliet, Miranda, Daniel, Annie, Susannah, Heather, Lynda, Joanie, Rob, Susan, Sara, Rosamund, Ian, Thomas, Sarah, J E.... hope I haven't missed anyone! Thank you Brighton! Thank you to Mike & Viv for your help.
Also Margaret, Tom (& Jude) for deciding to donate monthly... wonderful.
Lastly to my wonderful Mum in Lydiate Merseyside who is hosting a coffee morning & raffle, ably helped by Brenda... date to be confirmed!

The Not Now... exhibition at Lauderdale House Highgate opens on Tuesday 27th April (PV Wed 28th 8-10pm). So I will also be selling my knitted family portraits... please come along!

More fund raising ideas are all welcome... this is an on going cause...
The money raised so far has gone towards the deposit for the Son-Rise Program®.
Thank you again and please spread the word.

Tuesday 20 April 2010

Nykki and Jane having run the inaugural Brighton Marathon together..
Sheer determination keeping them for toppling over under the weight of their medals!

Sunday 18 April 2010

Nykki Irvin running for Raffy!

Nykki ran the Brighton Marathon today and we are all very proud of her.
Thank you so much Nykki. Now Laurie please post up lots of pictures of our hero!
Nykki made it through the whole distance even with a leg wrapped up in gaffa tape - now that's true grit!
And she did it all for our wonderful Raffy.

Ruth & Bri x

Thursday 15 April 2010

Not Now... exhibition Private view 28th April Lauderdale House Highgate

A week and a half to go before the Not Now... exhibition opens. Still trying to make the last few knitted non-typical families and finish off all the rest! My knitting machine needs an overhaul, it's just about managing to keep the stitches on the needles! I've been doing a lot of felting and managed to thrift someone's craft oddments at a car boot. It's pretty hectic especially with the 2 small humans having the pox. Raffy likes the 'man sybol'!

Raffy's 6 month developmental check

Raffy's appointment was almost a total disaster. Double booked with another child. Had to see someone else who told us she was familiar with Raffy's case. Then obviously hadn't read his notes because she kept asking if he was eating meat 'no' and then asking does he eat chicken 'no' and fretting about a lack of protein. This is the boy who couldn't chew 6 months ago! And of course she had no idea about the drinking. Raffy ignored her completely. Then our regular consultant came in to tell us he wasn't going to refer us to GOS because we may as well see the health centre resident psychologist as the advice would be the same... We insisted the referral to GOS go ahead and listed our reasons why. He is hopefully being referred now. A real battle. Exhausting. The good news is we are registered on the Son-Rise Program® now.. which is scary because we need to raise the funds, but also brilliant because this really will help with all his problems.

Tuesday 13 April 2010

Raffy's 6 month developmental check

Raffy has his 6 monthly developmental check up tomorrow morning. That's going to be interesting, he hates being investigated! His notes said 'defiant' after the first one a year ago...missing the point about autism really (difficulties with cognitive skills & lang). We have also finally been referred to Great Ormond Street Feeding Unit, so we will need to remember to make sure the letter has been sent and the wheels are actually in motion. Referrals can be forgotten about. We've been trying to get to the GOS Feeding unit for over 18 months! This is how long it's been since Raffy drank anything... hard to believe. I used to think he would die overnight, now I worry about the damage to his internal organs. Anyway it's all worry. No wonder my immune system is going mad!

The Son-Rise have well-documented positive outcomes for children with severe feeding problems, far more extreme than Raffy. Raffy has just managed to avoid having a tube inserted through his stomach. Basically i think because Brian and I do round the clock spoon feeding. It has taken up pretty much all our resources over the past 18 months - in terms of time and hence finances!

I've lost a lot of faith with the UK orthodox approach, it's good up to a point. But it's still all parent led. You get bits of advice but it's not enough. I think we really need the Son-Rise Program now, before we all go under as a family! This is why we are asking for your help. I am someone who is pretty private and I don't like asking for help but this is about our wonderful boy and also not just him... this is affecting us all and I know it's not sustainable.

Ruth - Raffy's Mum

Thursday 8 April 2010

Raffy just before he was struck down with the dreaded chicken pox...

Wednesday 7 April 2010

Not Now... exhibition 27th April London

I am knitting, felting, sewing, thrifting and generally making like a mad woman to finish my piece of work for the Not Now... exhibition.

Not decided on a title yet but I will be selling all my cookie cutter boys, girls and families at the PV and during the show to raise funds for Raffy to do the Son-Rise Program®. More images of work in progress (possibly with the battered and bruised hands in shot) and ongoing updates soon...

Ruth (Raffy's mum)

This is the munchkin who, with your help, will get to go on the Son-Rise® autism programme. It could make a massive difference to his life. This is the start of a huge fund raising journey for Raffy's parents. I'd love to start them off with your help. If my knees hold out I intend to run/walk/crawl the 26.2 miles of Brighton's first marathon on April 18th. If you could possibly sponsor me I would love you forever. Please become a 'fan' of Raffy and I will keep you updated on how to go about it and I promise to post photos of my 'run' so you get to laugh at me as much as you like. Lets see if we can make it happen.

Nykki Irvin x