My Neice's Daughter beat Cancer even with the Beckwith-Wiedemann Syndrome

The easiest way of filling in the DLA / PIP Application Form is to look up all symptoms of Beckwith-Wiedemann Syndrome, go through them and have the PIP form close to you or I can message you an a website where there is a test one, which would help you.

It would be the Care Component that she would be entitled to, because you need additional care for a child with this syndrome.

2015 - 2016 Current Care Weekly Rates are:

Lowest - £21.80

Middle - £55.10

Highest - £82.30

Do you know anyone that could help you with the form? Relative, or family member, or even a health official, you could go to CAB, but the condition is rare, so awareness of it is low, which could cause a problem. Do you have anyone that deals with your daughter often, as in health-wise? The highest rate is only given if you have to care for your child 24/7, this means getting up to her during the night etc.

Beckwith-Wiedemann Syndrome is basically an instant payment fron PIP, because of the additional care that is required. I assume she is in a 5 year remission period for cancer now. Perhaps your doctor could ask a District Nurse to help you with the form, they would have access to her health records.

Just an idea.

Regards,

Les.

Haven't seen you in awhile (not literally! lol)... Then again, I have not been on here much myself. I have been undergoing physiotherapy - compression stockings, gawd those things started causing major cramps, so I stopped wearing them.

I'm also undergoing memory tests, I can remember things that happened years ago, but anything within the past few days, hours or even minutes I cannot recall. To be honest, I cannot even watch a movie now, because by the end I have forgotten what it was even about.

I have had other tests, sometimes I realize I have gone off on another path, totally different to what I was asked - most of the time I have to be reminded, and even then I am confused. I have been like this for about past 4-5 months now, I think - I had to look that up from the last Psychiatrist letter! They are trying to find out if it is medical or medicine related, all my medicines have been put on hold, with no changes to be made while tests are being done.

Well, I hope you are well, sat outside in a bikini and a deck chair!

Regards,

Les.

I did try and post a link where I have been collecting Dystonia and Fibro, differences, but it wasn't breached this forums rules. It was quite intteresting, and I been collecting snippets from all over the net.

Regards,

Les.

and everyone dropped their purses

as he strode casually to the bar

He chewed on his Liqurice stick

menacingly and narrowed his eyes.....

'Mister', asked a young boy with ragged trousers

'Are you really the Les from all the stories?'

Les + Riding Horses = No

Les + Liquorice = Yuck

Les + Eyes = Bloodshot and Tired! lol

Les + more kids! (Georgia I have 3 already!, well older ones that is!)

Les from stories, nah wrong one...

This Les lately, already needs a new hospital bed, and now because my stupid Occupational Therapist, suggested a Clos-o-mat at first, then changed her mind after looking up the price, decided to inform us to use a bowel in the toilet, they were £9 from mothercare. That was failure, so she suggested a pole by the toilet, which was turned down by the Housing Association. So, then she came up with a Bio-Bidet - and ordered it - even the demo was done in the house. Then my OT had to phone me to say the funding was not granted on the grounds it would not last, once purchased for £1,000. So, guess what - she had no choice but to apply for a DFG (Disability Funded Grant) for £7,000 + Labour Charges and ask for permission from the Housing Association, who would not turn that option down, because it increases the price of the property! And that was what she mentioned first!! but tried using cut-backs and failed big time.

I tried saving money on a new Riser / Recliner Chair - Retail Price £1,299 + VAT and delivery. Price of funding I could get up to was  £750.00... So, I went looking elsewhere for a cheaper chair, I found one online, then by taking off my VAT Exemption Number, and adding delivery the chair came to under £600.... I thought cool - got something right..... so I thought!! Then the people that were funding the chair started asking questions about the warranty, was it comfortable and big enough, because the price was cheap!! There was me thinking I am saving them money! So, then I contacted the manager of the company, and said what they had mentioned, and his exact words was "What do they want me to do, charge you more money?". And, now my stupid OT Officer has gone on holiday.....

She planned all that I reckon! lol Gawd, some people are so dithery for their jobs!!

I expect everyone is a legend in one way or another, none of us are the same in that respect.

I am dreading the meeting with the Psychologist in a few weeks, questions for a hour and a half. Find out a bit more about me, I guess. Nothing to hide, so I shouldn't be worrying about it - but I am - if that makes any sense?

Say for example, you were sat directly in front of me and facing me - if you asked me a question, in theory I should give you the answer instantly, but this is where I am failing. I start to answer your question, but then 'side-track' totally off what you asked me - then sometimes, I'll notice, but I cannot remember what you asked me at all - other times I go off the question totally and think I have given the right answer.

It is weird, I know - but it's been like this for many months now, and other things people have noticed, it's like I can remember anything from years ago, but a few minutes... and it's gone.

I cannot watch movies anymore, because by the end I don't remember what it was about.

Regards,

Les.