Wednesday, March 20, 2013

When does a carrot cost a carat?

When does a carrot cost a carat?
When it's a carseat!
Boom Boom!

(oh, how I loved Basil Brush!)

No, this is no joke...
Unbelievable but true.
A carrot - no, not the vegetable! - at the bargain price of (somewhere in the region of) £1800!
Attach "special needs" to a product required by law to keep our children safe in the car and you have a licence to print money.

No one could advise us on car seats for E.
Not physiotherapy
Not occupational therapy.
Not wheelchair services.
Not even our specialist neuromuscular physio.
(and you won't be surprised that social work didn't have an answer either!)
Apparently in the neuromuscular world it's a problem unique to SMA (presumably because of the young age at diagnosis?)

You might ask why we don't transport her in Snappie?
Good question...
It's safer at this age, and while we are able to transfer her, for her to travel in a car seat.
Ok, seems simple enough, yes?
Now to find a car seat that offers a little more support and adaptability than the run of the mill seat.
Not a difficult ask, one might think.
Well you would think wrong!
Coupled with the fact that no one could advise us on options available or even where to look, we stumbled blindly around the internet until I remembered that we had seen a company at Naidex a couple of years ago; now, what was there name again?
So, after some searching, a rep from JCM Seating came to visit and showed us a single option, The Carrot.  It seemed quite cumbersome on first inspection but overall seemed very supportive and, perhaps most importantly,  E appeared comfortable in it.  There are modular options available to increase the seat depth and height of the chair (allowing for a good amount of growth - up to 160cm) and accessories like a table which would provide additional support should E want to read or draw on a long car journey.  Available in three colours, E was quick to choose red and then came the discussion of money:
"With the accessories you would need, you're looking at about £1600."
Well, I nearly fell off my seat: £1600 for a piece of equipment required by law which provides more support with children with special requirements, low muscle tone and poor core stability? The manufacturers (or distributors?) must be - surely - taking the Michael!
Our quote (£1800 and so pounds...) came through in December but we haven't taken it further yet and purchased one.  This car seat will need to be funded privately and by Jove, it's a wad of cash!  What we need to do is find a charity willing to support an application for funding; in the meantime, E continues to grow (out of her current seat) so I should get a move on, pull my finger out and source some funding to ensure that she is safe and comfortable while riding in the E-Mobile.

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