Multiple wheelchairs

[mummy3]

Ok this is a bit of an odd one.

I have a wheelchair for as needed. I have type 1 Ehlers-Danlos (EDS1), I dislocate pretty much everywhere and have skin/healing/pprom issues. I also have Isaacs syndrome which when its flaring bad, I cant walk period. So that's 1 wheelchair.

My 6 year old is awaiting delivery of his electric wheelchair for his EDS1, 2 wheelchairs.

My 3 year old and 10 year old are in the process of getting the medical paperwork to get them qualified. So 3 and 4 wheelchairs!!!!

Of my so far 5 kids, all have EDS1, its meant to be 50/50

I don't think we can fit them in the house

 

[sequeena]

Oh my gosh! My LO has eds type 3 and has a wheelchair. It's enough having 1 never mind multiples!

 

[mummy3]

Its mental isn't it?!

We have the extreme hypermobility and hypotone of type 3 with the classical type (our genetic tests confirmed classical) so as you know, wheelchairs are invaluable. It just looks like we've taken up some kind of extreme wheelchair racing

Crazy thing is insurance will cover electric wheelchairs 100% as well as assistive technology with voice recognition software for the writing aspect but wont cover my babies formula which is vital

For Thomas, I don't know if his wheelchair is electric and if it is ignore lol but if not push for the electric one, esp as he gets older. EDS is body wide so using the regular wheelchair will put stress on the upper joints. Sorry you're dealing with this too The positive is that our kids have dx early so we can limit the damage and protect the joints/skin etc way more than adult dx.

 

[sequeena]

Currently it's a manual pushchair as he's only 3 but we will definitely be pushing for a electric one in the future.

That is ridiculous about the insurance but sadly it doesn't surprise me

 

[mummy3]

Def push for electric, gives them more independence too I think, esp as they get older.

It isn't that surprising I guess, I'm used to the NHS so his formula would get covered but it would be a huge fight and wait for a wheelchair etc, whereas here it was really easy Literally everything is covered and given except the formula! Like little guy can get 5 therapy sessions a week at home free but no food