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Tuesday, September 02, 2008

Lewis update

It has been a while since the last post, its been very busy. So just a quick update to let you know Lewis is doing really well now after coming out of hospital on Saturday. Lewis had suspected pneumonia and then a possible strep throat infection and so has been on antibiotics for quite some time, first by IV and now orally (well through his tube!) at home. Lew is brighter than we have seen him for a long time. Lots of smiles and laughs! I will try to get some photographs on soon. And dont forget to buy the DAILY MAIL today (Tuesday 2nd September) and look for an article about Lew in the Health Pages or at Daily Mail online at http://www.dailymail.co.uk/health/article-1051552/How-cruel-disease-paralysing-little-boy--knows-kill-him.html Thank you to everyone for your emails, texts and phone calls checking on Lewis. ************************************************************************************** UPDATE 4th September 2008 Thank you to everybody for your emails, comments on Lewis' website and also in his guestbook. We will be replying to everybody soon and will be checking out all your suggestions with Lewis' neurologist. Lewis' story in the Daily Mail has spread as far as the US on the Fox News website - http://www.foxnews.com/story/0,2933,415801,00.html so thank you very much indeed to all the Fox News website readers who have contacted us too. We will be in touch. We also did a radio interview yesterday with BBC Radio Sheffield. You can hear the interview online at http://www.bbc.co.uk/southyorkshire/content/articles/2007/05/08/radio_sheffield_click_of_the_day.shtml and click on Wednesday. Lewis is feeling much better after his recent hospital stay. I will get some photographs up on the website very soon.

15 comments:

Anonymous said...

Sorry to hear about Lewis
I am a researcher looking into the effects of microwave radiation from phone masts, base units of cordless phones (which emit all the time) and WiFi.
The evidence for neurological and other damage from this radiation is mounting. The UK medical profession do not know much about it unlike the German's
I would advise going to see a kinesiologist who can look to find out if it could be radiation damage
In the meantime remove all wireless devices as a precaution.
For further info please ring me, Sarah on 08704 322 377 or see
www.mastsanity.org

Anonymous said...

On reading your story, it struck me that some of the symptoms Lewis exhibits are symptoms of Lyme disease, including the comment that he seemed perkier on antibiotics.
The standard NHS tests for this are very unreliable and most doctors seem to think [wrongly]that the illness is rare in UK. If you wanted to pursue this, you could contact the private Breakspear Hospital in Hemel Hempstead for evaluation and to arrange for more sensitive tests.
Good luck to you all.

Bug said...

hello I read your story about your son, was he tested for Spinal Muscular Atrophy? ALL of what he wen tthrough and is going through sounds like SMA. To research it you can go to www.fsma.org Best of luck to you and your son. You are in my prayers Sheila mom to Skylar SMA TY II

Natasha said...

hi we have a number of members at specialkidsintheuk.org who have similar sounding conditions - some diagnosed some not. please join us on the private forum at http://www.specialkidsintheuk.org/

sunbeam said...

There have been some suggestions - here are 2 other sources.

I tried to post to the GuestBook but it was not taking the post for some reason.

I recently posted this comment about Health on my blog.

Health Information: pH balance and other sources.

I have recently come across some interesting [to me

anyway] approaches to good health.

1. Dr. Robert Young, a US microbiologist, has

written a Book ‘Sick & Tired’ where he outlines what

he has discovered [or re-discovered] is the cause

underlying all ill health. He says it is caused by

an imbalance in the pH levels of the blood and

tissues - caused by an acidic lifestyle. And he

recommends how to alkalise our Systems.

see www.phmiracleliving.com
for more information.

I have already amended my eating over the last 12

months or so to be in a better alkaline pH balance.

2. Dr. Hulda Clark - a Canadian Doctor - who says

the main cause of all diseases are pollutants - and

parasites !!

She has written a few books and there are a couple
of web pages to see:

www.drclark.com
and www.drclark.net

I would be particularly interested in seeing someone
put these methods to the test - and see what
happens, especially in serious conditions, and where
the doctors may have given up hope.

Anonymous said...

I just read the article about your son and my prayers are with you. I have a friend who is in her 50's.
She was healthy and didn't have any medical problems. One day she just woke up and couldn't move her legs. They never really came up with a diagnosis and just told her that since all of her tests came out normal that she must of had some sort of virus that attacked her spinal column. Unfortunately still to this day, she can't move her legs. I hope that you get your answers and that things go well with you. my email is johnson12233@charter.net

Shelley said...

Hi Sam, read the article on the Daily Mail website, so very sad. I wish Lewis well for a complete recovery from his latest illness. Glad to hear he is on the mend. Take care and speak soon.

Loads of Love Shelley xxx

kelly moore said...

hi, sorry to hear about lewis. I have a 5 year old daughter named kelsey that has the same symptons as lewis and no-one can seem to come up with anything which is very frustrating as she is slowly fading away.... this has been going on for roughly 2 years now!!!! if you would like to get in contact with me (i would appreciate that alot) email: kellymoore529@hotmail.co.uk
tel: 01778 341322 or 01733 571929
thanks again, kelly...

Anonymous said...

I am so sorry to hear about little Lewis. He is absolutely the cutest thing. I saw it mentioned before, but has he been tested for Lyme Disease? And has he been tested for Celiac Disease, specifically Celiac Crisis with hypokalemia? Celiac disease has a very, very wide range of symptoms and no two cases are alike but it is definately worth a shot. You and little Lewis are in my prayers and please us posted.
ashlea5297@gmail.com

Anonymous said...

I am so sorry to hear about little Lewis. He is absolutely the cutest thing. I saw it mentioned before, but has he been tested for Lyme Disease? And has he been tested for Celiac Disease, specifically Celiac Crisis with hypokalemia? Celiac disease has a very, very wide range of symptoms and no two cases are alike but it is definately worth a shot. You and little Lewis are in my prayers and please us posted.
ashlea5297@gmail.com

Kerry and Co said...

Hi Sam and Lew (and Samual!),
Good to have an update on things. Also very glad to hear Lew is out of hospital (urgh, vile places!). Hope you are coping ok with this last bout.
Speak to you soon
Lots of love Kerry & Co

Tina said...

Hi your story wa posted on special Kids n the UK..we hav a child with a mysterious deterioration of her condition nd ae under the care of a neurologist in Sheffeild too.

For wonderful support look into
www.specialkidsintheuk.org
wishing you every good thing!
hugs
Tina

Anonymous said...

I read the article with much interest and wondered if Lewis had been tested for Ataxia Telangiectasia? There is more information on the Website: www.atsociety.org.uk
I wish Lewis and your family all the best

daniela said...

hi,

where can i send a donation specifically for the purchase of the computer for your son to communicate with--the kind he uses at school? the dailymail article mentioned you need to raise money for one at home.

i wish to contribute to this.

danielahessscholl@gmail.com

a family in new your is cheering him on...

warmly,
daniela hess scholl
www.bertscholl.blogspot.com

Anonymous said...

yo,
when im back in the uk im gunna do some fundraising for that computer for lew too!
take care
lawseyy.

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!