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Newby - Carers UK Forum

Newby

Tell us a bit about yourself here.
Hi my name is Glenn I am a single dad of 6 years with 4 young children living at home and another 7 much older working children who don't live at home thank god (11 in all) Image lol. The ages of the children living at home are 6, 7, 10, and 12 , the 10 yr old suffers from EPIDERMOLYSIS BULLOSA ( This is a skin blistering condition ) it is caused by the protine in his skin not meshing together properly. This means that blisters can be caused by presure and or friction eg: The type of clothes he wears they must be light ,tracksuit ( no jeans or normal school trousers , trainers or slippers no normal shoes ). He also uses a wheelchair for school it is really tiring most of the time I'm not getting to bed till 3.30 - 4.00 am settling him down in bed changing bandages carrying him up and down the stairs to the toilet and then up again at 7.00 am, the other children are fantastic and help as much as they can and they never complain because they know he needs a little more attention than they do BUT they know I love them as much as each other. You will have to forgive my rambling but i don't get much adult conversation lol. Anyway thats me and my family hope you all hav'nt fell asleep reading this. Image [/b]
Hi Glenn,

Welcome to the forum. I felt shattered by the time I got to the end of your post,so much for one person to cope with,even with help from the kids.
You have come to the right place where others will understand what you are going through and will try help support you when needed.
Do you get any outside help at all from services? If not Carers UK have a lot of advice on the main website and we can give links if anything specific you think you need more information about.

Rosemary
Welcome to the forum Image
Welcome to the forum, Glenn. Phew, it's not surprising that you're worn out! I saw a programme about the condition not long ago and it looks terrible and such hard work. Poor child, too- he/she must suffer so much, which makes your feelings a lot more intense, I should imagine. You have found our 'family' now, so hope it helps in some way xx
hi glenn a warm welcome
Image coffeex
Hello and welcome, as Mr Frost used to say! I read with interest your opening post about your son who suffers from epidermolysis bullosa. The 3 year old son of some friends of ours in Anglesey, has this condition, his dad is constantly campaigning and marathon running to raise funds for the charity DeBRA. I hadn't heard of anyone else coping with this, until your post. Like your children, his 6 sisters love him to bits and life in their houshold carries on as normally as possible. Our friend and his wife are worried about the school-starting logistics, where he'll have to have an assistant with him all the time, but they'll work it out. We all have to 'work things out', though, don't we? Welcome anyway. Fran
Welcome to the forum Glenn.
Hi Glenn, worn out just reading your post! Image
But you'll get lots of support here and sometimes we do have adult conversations Image Image
Happy Christmas
Hi everybody and thanks for all your messages , sorry for only just replying but it's usually hectic here, I only use the comp when I get a spare bit of time which is very rare lol Image .
I do get financial help eg: DLA , CARERS ALLOWANCE, but no actual physical help. I have benn waiting now for 2 an a half yrs for a 4 bed wheelchair adapted house and things don't look any better so looks like we will have to make do with our 2 an half bed hse ( Rabbit Hutch) lol. AHHHHH you see I'm rambling on again Image . Anyway myself and my family would like to wish all of you and your families a very merry xmass and a fantastic new year Image Image [/b]
Hi Glenn Welcome to the Forum and best wishes for a happy Christmas and a Happy New Year to you and yours.