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Thursday, January 29, 2009

2009 Update

It is still January and yet so much has happened already!
In September last year an article appeared in the Daily Mail about Lewis and we had a huge response. Many of you mentioned Lyme Disease but as we had been told Lewis had been tested for this, we did not pursue it further. But some of you did - and we are now looking forward to an appointment next month at the Nuffield Hospital in Newcastle to get Lewis a detailed test for Lyme in the hope that he does indeed have this (from an insect bite he got in Southern France in September 2005) and that with a long term course of strong antiobiotics, he can be cured.
Now we dont know if Lew has it yet, so we cant be too excited, but we are very very hopeful and we are immensely grateful to everyone who continued to tell us to get Lew tested for Lyme, even after we had put it aside as something he had been tested for and therefore didnt have.
This is, we are sure you can imagine, immense news. And we will of course let you know the outcome of our appointment on 9th February. The test results take several weeks to come back but we will let you know how the appointment went anyway and then we can all hope and pray for some good news from the results in a few weeks time.
Lewis has, so far, been incredibly well this winter for which we are truly grateful. Many people have commented on how well he is looking. We are so proud of him and of his big brother Samuel.
Some more good news for us is that Lewis, Samuel and I will be moving very soon to a bungalow - at the moment we are in a house with lots of stairs so this is going to be a great improvement for us. Also, the bungalow is much larger than this house so there will be plenty of room for all of Lewis equipment and we hope to have his sensory bedroom up and running very soon after we move in!
Thank you to everybody for all the lovely Christmas cards and gifts for both Samuel and Lewis. They both had a really lovely time.
We are still awaiting news of a date for Lewis' hip operation, although with the Lyme Disease testing happening soon, we are expecting that to be postponed until we know the results of the tests.
And finally, here are some lovely photographs of Lewis' Christmas. These two photos are from when Lewis visited the Bluebell Wood Childrens Hospice to deliver some gifts from The Lewis Jeynes Fund. We were able to purchase light effect sensory equipment for 3 of the childrens bedrooms at the hospice and we hope they will be enjoyed by all who stay there.
Here is Lewis with his cousins Katy and Emily.
Here is Lewis having a story with Granny.
Lewis received lots of gifts from Postpals - thank you all for the lovely presents for both Samuel and Lewis.
Lewis with Grandad!
Lewis with Daddy, Katy and Emily.

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!