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Tuesday, October 23, 2007

The busiest 4 days ever! Star Wars, a Prince and the zoo!

What a wonderful few days we have had! The photo above is by now quite famous - the moment when Lewis was presented with his Wellchild 30 years anniversary medal by Prince Harry himself - awesome. But first back to Saturday ... On Saturday we went to the Bluebell Wood Childrens Hospice open day for families. The Hospice is not due to open properly until Easter 2008, but we were allowed to have a sneak preview of what will be available when the doors do finally open. Until then (and since January) Lewis will receive at home care from the Hospice - Marie and Jo are his carers and they are the most wonderful, caring, lovely ladies. Lewis is very lucky. The fact that they are both blondes ... well you know Lewis and blonde ladies! It was very traumatic to start with - being in a place like that and knowing that one day we will NEED a place like that ... it really does put things into perspective. We live day to day with Lew, we dont look at the future, but visiting the Hospice really brought that to the front of our minds for a little while and it was very scary. HOWEVER, our minds were quickly put at rest. The staff are awesome, so friendly and happy and caring, and fun! And the facilities are awesome, and of course the Hospice is not just a place where children go to spend their last days/weeks of life, but somewhere they can go with their families just for a holiday - and it really is a holiday! Its like home from home but with people around you 24/7 to support and help you and to make your experience as comfortable as possible. We met up with Debbie and Matthew while we were there and Debbie and I had a good chat about how we would put the children to bed and then drink champagne while lounging in the jacuzzi! Lovely! Often, the way to get through hard times, when the dark thoughts come, is to laugh and joke and say mad off the wall things. It gets us by! So if you sometimes think 'what on earth is she on about?' - I'm just getting by! Lewis was most impressed with the Star Wars characters who were around for photo opportunities and to make us laugh! He picked out the ladeee quite quickly -I am sure that underneath her Star Wars costume, she was blonde too! It was great to see all the people we have been involved with so far at the Hospice, Katie our team leader, and Lynda who is head of care and who was our first contact at Bluebell Wood back in December when we first realised Lewis was VERY ill. It was also great to meet some new people, although I am sure all of us would rather have not met because we'd all rather that places like Bluebell Wood Childrens Hospice werent necessary, but sadly they are. Bluebell Wood Childrens Hospice (like all childrens hospices, I believe) has very little statutory funding and they do rely very heavily on fund-raising. So please, next time you hear about a Bluebell Wood event, or see a Bluebell Wood collecting box, please please please do make a donation or a purchase, or go along to an event. And of course dont forget the Bluebell Wood charity shops. So now we come to the big day - Monday! We set off just after 8am on Monday in the car, down the M1 to London. We had a good run, despite roadworks and traffic jams! And we were at our hotel (which was very generously paid for by Lewis' Aunty Lucy) at lunchtime. Aunty Nicola and Grandad (my sister and my dad) met us at the hotel just after 1pm and after a quick cup of tea, the preparations started for our big night! Nicola did my hair and make up (she is a miracle worker!) and we got Lewis and Samuel into their smart clothes. Grandad had bought Lewis a lovely cuddly teddy which Lew loved watching Grandad play with! A bit later, Aunty Lucy arrived with some lovely cards from Lewis' cousins Katie and Emily, and two super books for Lew. Very quickly it was time to get our taxis to Lords cricket ground for the Awards. We were so excited!
On arrival, we were offered champagne or orange juice (or both of course!) and we were made to feel very very welcome. Lewis got to meet Noddy! How cool! There were lots of photographers and lots of people from Wellchild and Best magazine who came over to introduce themselves to Lewis and the rest of us. Soon it was time for Lewis to meet Prince Harry! We were called through to a separate room to await the Prince's arrival. It was very very exciting!
While we were waiting, we got to know a beautiful young lady (blonde!!) called Natalie Robinson who was also being presented with a bravery award for the 16+ age group. Natalie is 18 years old, she was completely fine until she was 13 years old when she became very ill. Natalie was finally diagnosed with a very rare hypereosinophilic multisystem vasculitis which has attacked all her organs. Natalie has spent an awful lot of time in hospital, and is on oxygen constantly. Despite all of this, she has the MOST BEAUTIFUL smile and she is just wonderful. Lewis loved her instantly and has put his name down to be her next boyfriend! But he'll have to join the queue behind Westlife! We discovered that Natalie is from Doncaster !!! but has had to move to Sheffield to be nearer the hospital, as she has spent so much time in hospital and it has become increasingly difficult for her family to be near her when she is admitted, hence the move! You can read more about Natalie on her website www.caringbridge.org/visit/natalierobinson. Please do take a look and leave a message in Natalie's guestbook. It only takes a few minutes to click on a link on Lew's website, but leaving a message in a guestbook makes a big difference to someone's day!
We didnt have to wait long for Prince Harry to arrive and the atmosphere in the room was electric! We were all so excited! Lewis was second in line to meet with Prince Harry and we were completely overwhelmed by him! Lewis gazed at him, I am sure he could tell that here was a person who really genuinely cared. The Prince asked lots of questions about Lewis and spoke to Lewis as well, and we really really felt so privileged to have met such a kind and thoughtful young man who just happens to be the Queen's grandson!
We went back out into the main room to tell everyone about our very exciting experience! And then it was time to go to our tables into the Awards hall. En route to our table we bumped into some more celebrities (more blondes including Camilla Gallerup from Strictly Come Dancing!!!) who Lewis was very happy to gaze at as they asked about him and had a little chat with him!
We were joined at our table by a lovely lady from the Wellchild Charity and by a man who seems to be rather good at swimming !!!!! Mark Foster, 4 times Olympian, 6 times World Champion, 2 times Commonwealth Champion, 10 times European Champion and 8 times World Record Holder! So quite good as I said! As Lewis also loves the water, it was very exciting for us to meet someone who is obviously so at home in it! We didnt ask him if he'd like to pop over to use Lew's spa pool when it arrives, but we might do now lol! When it was time to present Lewis, award, Mark Foster went up to the stage to talk a little about Lewis before inviting us on to the stage to collect the Award. We went up with another Wellchild 2-3 year old Bravery Award winner, Cody Taylor. Cody was diagnosed with Hurler's Syndrome and despite her battle with this debilitating condition, she still manages to smile and is absolutely gorgeous!
Aunty Nicola!
A very tired Lewis with Aunty Lucy.
It was a very emotional evening, hearing about the other children who had won awards, and about the medical professionals who have worked so hard to help them. The children who won awards were:
Best Brave Child 2-3 years old: Lewis Jeynes and Cody Taylor
Best Brave Child 4-5 years old:
Oliver Burton (born with Downs Syndrome, then diagnosed with leukaemia)
Katie Ellen Jones (born with Pallister-Hall Syndrome)
Best Brave Child 6-8 years old:
Rebekah Hesmer (suffers from progressive symmetric erythokeratoderma)
Anthony Wilson (has DiGeorge Syndrome)
Best Brave Child 9-11 years old:
Zena Barthorpe Robinson (has a condition so rare, it is named 'Zena's Condition')
Ryan Kelly (born with velo-cardio-facial syndrome)
Best Brave Child 12-15 years old:
Joshua Edwards (had a blood clot on his spine resulting in complications)
Jodie McLoughlin (has Turner Syndrome)
Best Brave Child 16+:
Natalie Robinson
Tom Walker (had osteosarcoma)
Best Caring Child:
Simon Austin (cared for his brother who had Wilms' cancer)
Chloe Sewell (cared for her sister who has ADHD, borderline autism, and scoliosis of the spine)
You can read more about all the children who won an Award in this week's BEST Magazine - dont forget to go out and buy it!
After all the awards had been presented, all the children were invited back on to the stage to be presented with a very special commemorative medal as it is the 30th anniversary year for the Wellchild charity. Prince Harry presented each of the children with this medal, and as Westlife were onstage already after presenting Natalie and Tom with their awards, we all got to have our photographs taken not only with Prince Harry but with Westlife too!All the children were then taken through to meet a very special guest who had taken time out of his busy schedule in the North Pole (or is it South?!) - yes it was Father Christmas! Each of the children was given a present from Father Christmas, and they all had their photographs taken with Westlife again! Natalie even got ANOTHER kiss from them!
Lewis and Mark Foster (Olympic/Commonwealth, etc swimmer) and the presenter from Newsround yay!
It was then time to mingle and we got to meet some other celebrities, and other families of children who had been presented with Awards. Lewis and I had to have a chat with Kristian Digby who co-presents the TV homes programme 'To Buy or Not to Buy'. Each morning Lewis has his bathtime routine which includes watching TV while I get him dry and dressed for the day ahead. We often watch 'To Buy or Not To Buy' during this time and Kristian always makes me laugh! So it was really great to actually meet him in person!
Before we left, Lewis was given a gorgeous Harrods teddy bear, and a bag full of goodies from Next. Around 8.30pm it was time for us to get our taxi back to the hotel, we were all very tired! It hit me again once Lewis and I were tucked up in bed. Lewis fell asleep very quickly and as I lay looking at him, I recalled again why we were there. And again, we would wish that we werent in a position to have been to such a wonderful event. Believe me, its much better being sat at home watching it on TV, shedding a tear, and then going back to your normal, healthy life. Sadly, for us and for the other children who won awards, that doesnt happen. This is our normal life, everyday a struggle of some kind, but at the same time, everyday an absolute blessing to be filled with as much happiness as possible because who knows what tomorrow brings.
On Tuesday, we had a bit of a lie-in and then got up to get ready to go to London Zoo! It was extra exciting as we were going to finally meet Nathan (www.caringbridge.org/visit/nathanbovell)!! We couldnt visit London without meeting up with Aunty Nicola and Evie (Lewis' cousin who had her face painted as a tiger!) as well as our old friend Catriona with her 2 daughters Tilly and Eliza! Here is a photo of Tilly!The last time we saw Catriona, Tilly was alot younger and Eliza was still growing inside Catriona's tummy! This is Eliza!Now Catriona has a new bump, but this is (99.9%) a boy one! We hope it wont be another 18 months before we meet up again!
Meeting Nathan for the first time was amazing and completely freaky. From the first time I saw a photograph of Nathan, I knew he was very similar to Lew, and to meet him in person, and to see him being like Lew, it was mind-blowing! He is the most scrumptious little man, and when he smiles and chuckles, it absolutely melts your heart! Anna (his mum) is absolutely gorgeous and so lovely. It was great to finally meet her after all this time chatting through email, msn, texting and by phone. Lewis was so excited to be surrounded by children, and Tilly kept us all very much entertained as she has a lovely character and is very confident!
It was very sad that Declan and Caroline (the third part of our trio) couldnt make the trip to London, but Dec isnt really up to the travel, so we're going to visit him in December instead.
The zoo was absolutely packed and unfortunately, when places are packed and people get stressed, they dont have as much patience with wheelchair users as they might have on a less busy day. It could be argued that we should have gone on a less busy day, but we were only in London because of Lewis winning an award and so the date chose us, rather than the other way around. Still, we did get to see some animals, but it was more about meeting each other in the end, and alot less about where we did it! But .. now we know we should have chosen somewhere alot CHEAPER! Haha!
Now we are back home and still very tired! We hope you have enjoyed the lovely photographs from our very busy few days, and that you will take the time to follow the various weblinks. And here's another ... http://www.wellchild.org.uk/ - thank you to Wellchild and Best magazine for presenting Lewis with his award, and for giving us all such a wonderful and memorable evening. The awards ceremony will be televised from 1st December on The Community Channel (SKY channel 539 - http://www.communitychannel.org/) and on the Wellchild website, but if you want to watch the videos about each child, you can do that now at http://www.youtube.com/reviewawards.
I have also added some new video of Lewis to our Youtube website - http://www.youtube.com/SmnthJeynes

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.

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!