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Wednesday, July 25, 2007

The Wellchild and Best Magazine Childrens Health Awards 2007

Unkown to me, James had come across a copy of BEST magazine and noticed that nominations were being invited for the Wellchild and Best Magazine Childrens Health Awards 2007. So, he put together a very touching letter which he posted off just in time for the deadline for entries (please post your email in our guestbook if you would like a copy of the letter emailing to you). Today we had a telephone call from Wellchild/Best to say that Lewis had been chosen for the Best Brave Child Award 2-3 year olds. It was overwhelming. What is hard is knowing that we would much rather Lew wasnt in a position to be winning such an award, and also knowing that hundreds of other children all over the country are brave just like Lew. So Lew will be collecting this award on behalf of all of them.
I have to admit, I had never heard of the charity Wellchild, so I am now hoping to raise awareness of this very worthwhile charity via Lewis' website so please please follow the link and see what Wellchild can offer to children like Lew all over the UK and perhaps you could even help by donating not just money but your time! Check it out! We will be attending an award ceremony in London in October (Lew's health permitting) but will keep you up to date until then on developments. Thank you to Wellchild for choosing Lewis who really is such a very brave little man. He smiles despite all the changes he has gone through, the pain and the deterioration. And of course all our love and thoughts go out to the parents of children like Lew who also have super brave children just like Lew.
Helpline number - 0808 801 0330
Helpline email - helpline@wellchild.org.uk
Helpline text - 0778 147 25 99
Now, for a change I have included an article written by Phill who is married to Jayne and they have a son called Cameron who is 3 and who has epilepsy. Jayne and Phill have been very helpful as we get used to Lewis' new PEG as Cam has had his for 2 years so they are experts in the field! We 'met' on a community forum called POKWE - Parents of Kids with Epilepsy - and below Phill provides more detailed information about how POKWE works. We have had some fantastic advice and support from other POKWE members too - Lewis' friends Declan and Nathan - their mums post on pokwe too!
Here is a photo of Cameron:
At the end I've added some photos of Lew as well, with NO TUBE hooray!
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So ... POKWE - an article by Phill
The original POKWE (Parents Of Kids With Epilepsy) group started on Yahoo! in 2001. I joined in 2003 after we found out about Cameron’s epilepsy. The group has a wealth of knowledge from all over the world. All the families have no medical background, except for what they have found out from talking to the doctors and articles the members have read on the internet or publications. As the group expanded, it started to go over the ethos of a “small family” group. Tracey, the site owner decided to expand it to the next level, and set up pokweuk.org, to run alongside the Yahoo! group, as Yahoo! is limited to what it can do. Tracey funds the site out of her own pocket, and does it for 2 reasons. The first is to become a beacon of support to parents who have found out about their child’s condition, and need help and support, the second, it is dedicated to her son Kevin, who passed from a form of epilepsy called SMEI. Tracey began the basic framework of the site in June 2004, and asked me to become a member of the site admin team. Together with the site moderators, we hope to build upon the success of the Yahoo! site, to remain supportive of families around the world and to become a “one stop shop” for all things on epilepsy.
The site is split into 2 sections. The home page which contains articles which have been written by parents, or pieces taken from other websites. Along with these, we have personal stories from family members; giving background information on their child, as well as medication and other things they have tried to help control their child’s condition. The second part of the site is a web forum. This contains many topics, which members can reply to. Part of this is a joke section just somewhere where members can chill out and forget their worries for a while. Or if they need to, they can rant and scream in a topic section, just to let off steam. One section that we like to get people to do is a roll call. This is just a small section where people can post on their monthly activities, child’s progress, and how the family are getting on. The POKWE admin team look forward to welcoming you to our site.
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Lew's PEG - a bit sore but its getting better each day
Lew just after his operation. Lew catching up on sleep the day after his op. You may notice his white patch on his cheek - this is where his plaster was that held his ng tube on his face! Lew's first smile after his op was saved for his brother Samuel! Just chillin with my bro! Lew's good buddy Declan gave Lew a gorgeous glowing bear who accompanied us to the hospital! Lew got a parcel from his postpal (http://www.postpals.co.uk/) Helen - thank you Helen! Lewis' windmill from postpal Helen. Had to include this photograph of Samuel and his great pal Nikhita - its hard to believe Nikhita is almost half Samuel's age (Samuel is 14 and Nikhita is just 8).
A quick thank you to postpal Sian for Lewis' star stickers which arrived today! Thanks so much Sian and Jamie!

1 comment:

Anonymous said...

congratulations Lewis for being chosen to win the Bravery award for the 2-3 year olds! You really derserve it darling as well as all the other children who are soooo brave. Love the pictures too

My computer is broke at the moment so sorry if i dont post a comment on here but i will try and get on my mum's computer instead. Hopefully mine will be fixed soon

Lots of love
Sian XoXoX

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!