Terminal Illness??

[thelittledonkey]

Hi there,

I am wanting to speak to anyone whose child has a terminal illness. My DD's condition is so rare that there aren't any support groups secifially set up.

She is six months old and currently she is the only child that has ever lived this long with the condition, world wide.

If anyone is in a similar situation (big hugs) or knows of a good forum, please point me towards it.

We live in London

Cheers

thelittledonkey, welcome to SN - I'm sorry you are facing this uncertainty. Congratulations to your DD, though, a big achievement .

Have you heard of the charity 'Unique'? They are a national organisation for rare chromosomal disorders.

If you'd like to share anything about your DD's condition, personality...whatever...go ahead

Hi and welcome. I don't have any experience or advice, but just to say welcome here and please feel free to post for general support and if you just need a listening ear.

Preactical tips:
Blue badge from the council is available from birth for children with terminal illnesses, call the one stop shop at your council and ask them to fill in or send you the form <a class="break-all" href="http://www.bluebadgenetwork.org.uk/The%20Blue%20Badge%20Scheme%20-%20website%20details.pdfwww.shootingstarchase.org.uk/our-care/family-support-and-therapies" rel="nofollow" target="_blank">page three

Apply for dla now, your GP or paediatrician will do a DS1500 form so you only have to call and give basic information to the DWP helpline form-filler, rather than wade through 40+ pages of questions. the number is 08457 22 44 33. Then when paid maternity leave ends you'll be entitled to carers allowance.

Ask your GP's practice manager to put an alert on both yours and dd's notes so if you call, everyone knows she might be unable to wait for a routine appointment etc. If you have medication etc she can ask a pharmacist to do deliveries, also carers are entitled to flu jab etc.

And children's hospices are happy places which are mainly about living life to the full: they do a lot of activities, day care, overnight respite etc.