Help and advice needed please!

Welshchick81

Hi everyone! My daughter who is currently 5 was born with a number of health issues including a tumour in her eye, cleft pallet, hearing loss and trouble with her joints.  The genetics team has diagnosed her with stickler syndrome.  She has huge trouble walking due to her painful joints and I'm finding it impossible to get her around.  She is very big for her age and will no longer fit in her stroller.  Even getting her to her to her weekly hospital appointments is really hard.  I'm on the waiting list for a back operation as I have slipped discs so I'm in agony trying to carry her.  Social services are useless and I can't afford a disabled buggy.  I was wondering if anyone knows of any large strollers that would be suitable for a larger child? I would be very grateful for any advice offered.  Thank you xx

Blue Frog

Hi I'm not sure how it works in your area, as you mentioned social services. Is there a wheelchair service you can ask for help? I asked my child's Physio who referred us (Occupational Therapist could too) or ask your GP or maybe school nurse for a referral.

In terms of what may help:

How much does your daughter weigh? Most of the larger strollers I looked at have a 15kg limit, even though my daughter may have physically fitted in - and although they may be ok, I wasn't wanting to risk it.  I think it was a City Jogger we saw that was pretty huge. 

McLaren make SEND strollers, they are called Majors. DoBuggy's are identical but a lot cheaper. We have one, as a spare cause when we go to hospital in an emergency the ambulance can't take my daughter's wheelchair. 

There are several groups on Facebook (Special needs equipment buy/sell/swap and one I think called special needs pushchairs) there are usually a few on there and you can do a wanted ad.

Also maybe try Ebay - I have seen a lot on there

There are links to charities from the Scope site that can perhaps help with funding if you need to buy a new one yourself 

Blue Frog

http://m.ebay.co.uk/itm/Maclaren-Major-Elite-special-needs-buggy-secondhand-in-good-condition-/302442412409?hash=item466af8f979:g:ujoAAOSwqMFZmYF7&_trkparms=pageci%3Af2dd1c23-92f1-11e7-affb-74dbd1806e13%7Cparentrq%3A56d4f9a215e0a9caf1ab1ddcfff87659%7Ciid%3A7

Sam_Alumni

Hi @Welshchick81

Speak to your GP if you need equipment at home or to help you get around. They can tell you about local sources of help or refer you to your local Social Services or NHS.

Your local disability information and advice line may also have details of organisations in your area that hire wheelchairs and mobility scooters. It may also be worth exploring grants.

https://www.scope.org.uk/support/disabled-people/equipment  

What have social services said so far?