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Thursday, June 18, 2009

A glimmer of hope?

Today we have had a few positives, we managed to find out that we can be fast tracked to see the specialist on infectious diseases so we have organised that with our GP, we have seen Lewis’s Doctor in Doncaster who admits its not his specialist field but he will try to support whatever we need to do to help Lewis. As a result of the GP referral we should get a much earlier appointment for Lewis to be seen by the regional expert. If we manage to get to that appointment soon we will be able to assess how soon treatment for Lewis can start, whether that be through the NHS or through a private route. We have our fingers crossed that we can continue on with the NHS but it may be that we have to look at a combination of the two managing Lewis’s treatment and other medical issues. Lewis’s granddad is trying to make an appointment to see an American specialist while he is the USA visiting his brother (get well soon Great Uncle George) and it may be that we decide that the best option for Lewis to aid his recovery is eventually for us to travel to one of the better known clinics over there for examination and possible new treatment regimes.

All in all at the moment we are feeling a bit more positive than yesterday when we heard that the appointment would be months away ...

Lewis himself is very bright and energetic with his new feeding schedule and he is putting on weight which is really good news, with the possibility of treatment and maybe recovery ahead he needs every calorie he can get.

Thank you to all those who are keeping up with Lewis’s website, the emails are really helpful, sorry we can’t always reply as you can imagine we are pretty overwhelmed by the possibility that we can help Lewis recover and that is taking up alot of our time!

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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!