bdf newlife? please sign petition to help disabled children get equipment

[oililymad]

hi has anyone used bdf newlife to help get equipment for their children?
our wheelchair service said we could wait until the end of july before the cheap model they wanted us to have would be available, so we have applied to this charity they seem really good ( and i mean really easy application very helpful people) and helpful but wondered if anyone else had used them and how long it took?

also they are running a petition to get the government to provide the right equipment for families as opppsed to the basic bare minimum and waiting forever to get it the link is here

www.newlifedisability.co.uk/toopetition/index.php
it would be great if you could sign!!

yikes how odd. so because the hospital cocked yp dd doesn't count........nice

i dont make their policies only so grateful that someone is willing to help us. we have fought ttoth and nail for everything as until recently my children had no diagnosis and so no services. their condition is genetic, and so bdf will help us, but we have only recently found out and have spent thousands on oxygen saturation monitors etc over the ast couple of years.

i suppose a charity has to set guidelines fo the people they help. their money isnt limitless.

However i do think its a disgrace that we should even have to apply/beg to charities to get what our children need.
we came unstuck needing a oxygen holder for dd on a sn buggy for ds.
all my 3 kids have the same genetic disorder one is a teenager and we only just found out.

i am grateful for ANY help.

oililymad I am glad you were able to get help from them.
but I will give the petition a miss as I find it very odd that they choose not to help those that have been disabled at birth.

hi riven

my childre have an x linked condition called opitz fg.
well dr opitz says they do so... and there is no genetic test available because it costs too much money and only avavliable in germany

dd is a manifesting carrier ds1 and ds2 are both affected.
they have hypotonia, hyperextensive joints, asd, chronic constipation,tethered spinal cord (ds2 due mri next month)
dd has sleep disordered breathing OSA asthma severe reflux well the list just goes on and on.

sorry if tmi! not many have heard of fgs yet i am sure there must be loads of children undiagnosed.

riven think you are being fobbed of about the powered chair as dd has had one on NHS for yonks.

riven, I think that charities like this one don't include children with birth trauma etc. because many might assume that these children would have received compensation that could cover the cost of equipment.

It's just a thought, and I certainly don't think that it's right or fair before anyone has a go

this is probably going to send some people mad but

charities are ususally set up by an individual that has been affected by a particular problem
bdf newlife have an interest in noonan syndrome , but help other families as well.

i know it may sound unfair but i could say the same thing about applying to a charity that only heped children who have diabilities as a result of birth trauma for example.

they say they specifically set up their services where no others existed for those children.
so they dont do vehicle/home adaptations for eg b/c there is already services set up for that albeit charitable ones mostly.

just my pov thats all.

i still maintain my original point that charities shouldnt have to pick up the pieces from the nhs

sorry about typos i am exhausted today

deepbreath even if you persue a case it can take years to get a result and even then you won't always win.in the mean time tha child goes without everything bar the basics.
I understand that charitys have to have limits. but just found this odd. most likely as it is so close to home.
(2shoes)

mshadowisfab, I know a man in his 40's that only recently received compensation for something that happened to him whilst he was in hospital when he was 18 months old. Thanks to various cover ups, it has taken this long to get to the bottom of what really happened.

I suggested why some charities might not help, it wasn't my personal opinion. Far from it.