THE LEWIS JEYNES FUND presents
Celebration Dinner Dance to help raise money for Lewis' Lyme Disease treatment and related recovery needs (ie. physiotherapy, etc)
30th October 2009
Four Course Dinner
Hypnotist
4-course Meal
Disco
£25.00 for a ticket
Tel: 07740 192 123 for more details
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!
Lewis dad has finally been able to get through to the Infectious Disease doctor at Sheffield. They have lost Lewis' referral letter but have an appointment in for him for 9th September ... that is two and half months away.
We need to start Lewis' treatment ASAP, especially as he is always healthier in the summer and of course because the further away we get from his initial infection with Lyme Disease (September 2005), the less recovery we can expect.
The appointment on 9th September will be to talk to the doctor, to discuss IF Lewis even has Lyme Disease according to their archaic out-dated tests and if he does, what they can offer and when, bearing in mind Lewis will have to have surgery (for a port-a-cath or hickman line) which will mean more waiting.
There is NO WAY we are waiting until next year for this treatment - he needs it now.
Catch up on old posts HERE!
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.
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
