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Tuesday, October 16, 2007

Bravery

Almost everybody we meet comments on Lewis' gorgeous gorgeous long eyelashes! They say 'ooh we would pay good money for eyelashes like that!' ... If Lew had £1 for every person who has said that to him, he'd be quite rich by now!
So next week we are heading to London for Lewis' Bravery Award presentation. We are so proud of Lew, he has a smile even when things are really rough, and he has had more than his fair share of rough times, and still he manages to smile and sometimes (like today) present us with the cherished gift of a laugh!
If you havent already visited, and even if you have, please please take another look at http://www.postpals.co.uk/. At this time of year alot of the children will be particularly poorly (like Lew is starting to be now) with the change in the weather and the cold/flu season beginning. One particular little boy on Postpals who really really needs as much love and affection as you can provide is Jack B. Jack's parents raised funds to take him to America for some ground-breaking treatment, unfortunately it has not worked out and Jack is now back at home. Please please visit his webpage on Postpals http://www.postpals.co.uk/pals/Jack+B. I can guarantee you will be touched by him and his story, and hopefully you will find some time to send him a card, a letter or a gift, at this time when he and his family need smiles the most. Here is a photograph of Jack.
Jack has Neuroblastoma. Please do visit his page and try and send him a card or a letter to brighten his room and help him to smile.
Please follow this link to Postpals for the latest news, as well as a photo of Lewis - http://www.postpals.co.uk/news.php.
Today Lewis received post from two Postpal posties - June Junko from IL (Illinois?) and from Julie Barrett here in the UK, Devon. Thank you so much June and Julie for your lovely cards and the Barney DVD from Julie. They will go on Lewis' postpal wall which he loves to look at often as its also his playroom, but we always have to pause for a minute or two so that he can gaze at his bright and colourful cards, letters and pictures from Postpal posties.
Before I forget, the fashion show is going to be HUGE, our local ITV news programme (Calendar News) are going to be filming on the night, and the local newspaper (Freepress) will probably have photographers there as well! And if you are after a last minute ticket, I dont have any left but Alison may have 10-15 so please do give her a call (07840273597).

Here is a photo of our brave little boy, sneaking into mummy's bed as he's not been well the past few days.

We've had a busy weekend here in Doncaster and Lew has spent some time with his friends. We walked to Lakeside Village with Livia and Mun (in the rain!). Livia gave Lewis a very cute green soft rattle thing which Lew enjoyed hearing rattle as we bumped along! And later we went to Normanby Country Park in Scunthorpe with Jay and Luke! Lewis will be presented with his Bravery Award on Monday 22nd October at the Best Wellchild Childrens Health Awards 2007 at The Oval in London. On Tuesday 23rd October, BEST magazine will feature an article about all the winners from the Awards so please do go out and buy a copy!

The Awards will be televised on The Community Channel (Sky channel 539) in early December. I will let you all know nearer the time what the exact air date/time will be. http://www.communitychannel.org.uk/ and http://www.wellchild.org.uk/

Thank you very much to Helen Brierley for the AMAZING blue card for Lewis' new blue room. We are going to frame it and put it on Lew's new bedroom wall!
Also thank you very much to Chris, Sue and Alice for the lovely card - this has gone up on Lewis' post wall and this will also be featured in the next update.

And to finish, a poem for all the very special little boys we know and love and could never imagine living without.

As I Watch You Sleeping As I watch you sleeping, my problems seem so small. The rewards you have to offer me, are so big and so tall.

As I watch you sleeping, I realize just how great your accomplishments are. I know how much you struggle to have made it this far.

As I watch you sleeping, I can't imagine how my life would be without you. Even through the hard times I'd be lost without you.

As I watch you sleeping, I see just how much you have brought into my life. All the joys and happiness, all the wonder and excitement.

As I watch you sleeping, I am overcome with such love. Your sweetness and happiness, are something I can't get enough of.

As I watch you sleeping, I think just how lucky I am. To be the mother of such a beautiful little boy.

As I watch you sleeping, all of my worries seem to melt away. I know that no matter what happens, together we can make it through another day. (Thanks to Anna Bovell for that poem - www.caringbridge.org/visit/nathanbovell). Here are a couple of photos of Nathan.

We are very excited as we will be meeting Nathan and his mum and dad (Anna and Andy) on Tuesday at London Zoo! It will be great to finally meet up with Nathan and Anna as we have been online friends for several months now and with Lewis and Nathan being so very similar in condition, it will be an experience for both sets of parents to meet another child like ours/theirs!

And here is another photo of Lewis' friend Declan (http://www.declan-kelly.com/). We are hoping to be able to visit Caroline and Nathan in December.

And finally finally (again!) is a photo of my gorgeous brother Jason taking part in a cycling marathon in August. My brother Jason, like my son Samuel, has severe haemophilia A. He has a fantastic website at http://jasonpaultolmie.blogspot.com/. Please do check it out.

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Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!