Notices
General Chat This forum is for general topics and chat type threads.

Reply
 
Thread Tools Search this Thread Display Modes
Old 29 Mar 17, 08:58 AM  
Link to this Post
#1
janeywaney
VIP Dibber
 
Join Date: Feb 04

janeywaney's Reviews
Restaurant Reviews: 5
Spinal muscular atrophy?

Morning all

Friends of ours have just had the devastating new their 4 month old grandson has this life limiting disease.

The family have been told if he lives until 2 years old he may live until he is 5, and if he survives until he is 5 he may than live until he is 10.

Have any other dubbers have any experience with this disease and could you share (only if you feel you can) your experience and thoughts, ideas etc of what the family will be looking at going forward.

They have been offered some treatment in France and although the NHS will fund most of it they still have to pay £8,000 towards the first treatment We are arranging loads of fund raising activities etc to try and get help for them.

We are having raffles, bingo, race nights, and groups singing etc at our local pub. We have been calling in favours and asked for raffle prizes etc. One lady is doing a skydive to raise funds too. So I am asking if any other dibbers have any other fund raising ideas that we can use to raise as much as we can.

Thanks for any ideas or information regarding both in advance.

Jane
__________________
June 99 All Star Sports, March 2000 Wynfield March 01 Rodeway Inn, Nov 01 All Star Music
Feb 03 All Star Movies, March 05 All Star Music
August 06 All Star Sports, August 07 All Star Music, OKW August 08 OKW Nov 09 All Star Music Feb 10, OKW Sept 10 OKW Sept 2011 , OKW Nov 2013, Pop Cenury Sept 2014, OKW Sept 2015, OKW Nov 16, OKW Sept 17, OKW Aug 19
janeywaney is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 29 Mar 17, 09:08 AM  
Link to this Post
#2
EssexSue
VIP Dibber

 
EssexSue's Avatar
 
Join Date: Feb 09
Location: South West Essex
Mobile

We met a family on holiday last year who's little girl had this. She was about 7 years old and had a wheelchair but apart from this was a normal little girl. I realise there must be degrees of this but she has surpassed all her original prognosis. We got to know them quite well as she and her sister teamed up with our granddaughters and our daughter remains in contact with them.
EssexSue is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 29 Mar 17, 09:12 AM  
Link to this Post
#3
Megandllsmum
Imagineer
 
Join Date: Apr 14

Megandllsmum's Reviews
Hotel Reviews: 2
Originally Posted by janeywaney View Post
Morning all

Friends of ours have just had the devastating new their 4 month old grandson has this life limiting disease.

The family have been told if he lives until 2 years old he may live until he is 5, and if he survives until he is 5 he may than live until he is 10.

Have any other dubbers have any experience with this disease and could you share (only if you feel you can) your experience and thoughts, ideas etc of what the family will be looking at going forward.

They have been offered some treatment in France and although the NHS will fund most of it they still have to pay £8,000 towards the first treatment We are arranging loads of fund raising activities etc to try and get help for them.

We are having raffles, bingo, race nights, and groups singing etc at our local pub. We have been calling in favours and asked for raffle prizes etc. One lady is doing a skydive to raise funds too. So I am asking if any other dibbers have any other fund raising ideas that we can use to raise as much as we can.

Thanks for any ideas or information regarding both in advance.

Jane
Jane, so sorry to read this, sounds like you are very upset about all this yourself let alone your friends, sorry I've nothing to add about the disease, is there a charity for people affected by the disease they might be able to help and maybe contact a couple if charities like make a wish they might be able to advise on fundraising these charities pack a big punch and might know lots of tricks, a charity we were involved in was Merlins magic wand and they help families with disabilities and illnesses have days out.
I'm in Rotherham too what places have you tried for raffle donations, I used to work in a nursing home as activity coordinator and found a lot if the best places that were kind enough with raffle prizes were the independent shops and salons, set up a Facebook page printing everything you are doing and tell them you will mention and promote their business on that for their generous contribution.
Try some of the shops and restaurants on the precinct at wickersley there's a lot of independents up there.
Morrisons were always good sending me a letter I could take into store and I'd go in and pick things like wine and chocolates to add to raffle.
Lots of luck with the fundraising xx
Megandllsmum is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 29 Mar 17, 09:46 AM  
Link to this Post
#4
Leggibone
Imagineer
 
Leggibone's Avatar
 
Join Date: Oct 13
Mobile

I know it doesn't help at the moment, but a local family near us fund raise for the air ambulance with a big light display at Christmas, they start it around mid November, they usually get a bit of local press, they raised a couple grand last year.
__________________
Got the Florida bug... 2012 - Quaility Inn International
2014 - Rosen Inn International, Hard Rock Hotel, Yacht club and Bay Lake Tower! Mr Bears Grand Adventure, 2015- A sneaky to DLP- Sequoia Lodge, 2016- Another WDW trip... BLT, AKL, HRH and Rosen Inn - Mr Bear takes Boris to WDW, 2022 - Taking the small fry…. Coronado spring addition, 2024 - Riding solo?
Leggibone is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 29 Mar 17, 11:59 AM  
Link to this Post
#5
Eden
Very Serious Dibber
 
Eden's Avatar
 
Join Date: Jan 08
My mum works in a secondary school and looked after a girl with this
They were told she wouldn't make her teenage years so we're surprised that she managed to get to secondary school at all
She is now 19, she has declined over the years but is still going!
__________________
2013 Disney's Saratoga Springs Resort
2016 Villa - Indian Creek
2017 Disney's Port Orleans Riverside Resort
2019 - Disney’s Caribbean Beach Resort
2024 - Clearwater/Orlando/Cheerleading Competition!
Eden is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 29 Mar 17, 07:22 PM  
Link to this Post
#6
Pjamas
Apprentice Imagineer
 
Pjamas's Avatar
 
Join Date: Jun 12
Mobile

I know of someone who wasn't expected to make 16, they are now 26 and doing well. From what I'd gathered things can move along in many different ways and it is hard to predict. My thoughts are with them - what a difficult time.
Pjamas is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Old 3 Apr 17, 06:28 PM  
Link to this Post
#7
janeywaney
Thread Starter
VIP Dibber
 
Join Date: Feb 04

janeywaney's Reviews
Restaurant Reviews: 5
As way of an update of sorts Little Kayne has the most severe form of SMA and doesn't look like he will reach 2 years old.
He was taken into hospital with pneumonia and was diagnosed whilst he has been in Sheffield children's hospital he is on the critical ward at the moment. His lung collapsed, this was re-inflated but has collapsed again and he has another chest infection. Poor little mite I feel so sorry for his family.

Jane x
__________________
June 99 All Star Sports, March 2000 Wynfield March 01 Rodeway Inn, Nov 01 All Star Music
Feb 03 All Star Movies, March 05 All Star Music
August 06 All Star Sports, August 07 All Star Music, OKW August 08 OKW Nov 09 All Star Music Feb 10, OKW Sept 10 OKW Sept 2011 , OKW Nov 2013, Pop Cenury Sept 2014, OKW Sept 2015, OKW Nov 16, OKW Sept 17, OKW Aug 19
janeywaney is offline Girl Mouse Click to view Members Trip Plans Add Member to Ignore List
Reply

Thread Tools Search this Thread
Search this Thread:

Advanced Search
Display Modes

Forum Jump


All times are GMT +1. The time now is 06:13 AM.


Powered by vBulletin - Copyright © 2000 - 2024, Jelsoft Enterprises Ltd.
DIBB Savings
AttractionTickets.com

Get £10 off each Disney Ticket with the code ATDIBB10

Get up to £50 off per room at Disney or Universal with the code DIBBHOTELS


theDIBB Blog
One of the the five worlds found in Epic Universe, How to Train Your Dragon... Read More »
Disney announced that a new nighttime show, “Disney Dreams That Soar,” will run nightly at... Read More »
Walt Disney World Resort guests can get ready to have a “glowing’’ good time when... Read More »


theDIBB Menu


Exchange Rates
US Dollar Rates
ASDA  $1.2354
CaxtonFX  $1.2305
Covent Garden FX  $1.2544
FAIRFX  $1.2350
John Lewis  $1.2380
M&S  $1.2178
Sainsburys  $1.2354
TESCO  $1.2364
Travelex  $1.2353
Updated: 05:00 29/03/2024
Euro Rates
ASDA  €1.1447
CaxtonFX  €1.1419
Covent Garden FX  €1.1526
FAIRFX  €1.1432
John Lewis  €1.1457
M&S  €1.1263
Sainsburys  €1.1440
TESCO  €1.1445
Travelex  €1.1435
Updated: 05:00 29/03/2024

DIBB Premium Membership
Did you know you can help support theDIBB with Premium Membership?

Check out this link for more information and benefits, such as...

"No adverts on theDIBB Forums"

Upgrade Now



X