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Here are some suggested organisations that offer expert advice on SN.

Living with the knowledge that my child's life will be short.

(102 Posts)
Vio Thu 26-Jul-07 00:52:02

I am mom of a perfect boy , my first and only child, who is now 12 weeks old. Diagnosed with a life limiting genetic disorder and unlikely to live to celebrate his 1st birthday...finding it very hard to cope ..

totaleclipse Thu 26-Jul-07 00:54:48

So sorry, hard to know what to say to you hun, are you having councilling to help you prepare?

Leati Thu 26-Jul-07 01:02:13

I agree that you should be prepared for the worst but don't give up. 1st, 2nd, 3rd opinions. Keep looking until you find a doctor that offers some hope.

expatinscotland Thu 26-Jul-07 01:22:24

Vio, as an SN mum, just want to send my empathy.

Vio Thu 26-Jul-07 01:25:03

I already know that his passing is inevitable. not sure if any of you heard of a genetic disorder called EB, ( if you have watched a docutmenary, the boy whose skin fell off, my son was born with EB, the most severe form and its fatal in infancy..

I am still finding it hard to come to term with the fact that hes going to go.

anyone out there has the same experience in the past? child born with a life limiting illness or had a child who died at a very young age?

Leati Thu 26-Jul-07 01:30:37

I am sorry, I wish I could fix this.

Saturn74 Thu 26-Jul-07 01:34:46

Vio, I cannot even contemplate how difficult this must be for you.
Is there an EB support group?
I only know about the condition from seeing the documentary about Johnny, but I remember that his mother raises funds for a related charity.
I hope you are able to get in contact with parents who have cared for their children in similar circumstances to you.

expatinscotland Thu 26-Jul-07 01:39:30

I only heard about EB from the documentary, 'The Boy Whose Skin Fell Off'.

Leati Thu 26-Jul-07 02:30:39

Vio

Look into these.

http://dermatology.stanford.edu/gsdc/eb_clinic/eb-resources.html


and I highly recommend finding out if this next one can help

http://www.stjude.org/international

Leati Thu 26-Jul-07 02:58:37

http://www.debra.org/


Dystrophic Epidermolysis Bullosa
Research Association of America
(D.E.B.R.A. of America, Inc.)
141 Fifth Ave
New York, NY 10010
Contact: Miriam Feder
Tel: 212-995-2220

Leati Thu 26-Jul-07 03:00:22

http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1283

Last one

Leati Thu 26-Jul-07 03:31:09

This one is really good... has lots of resources including resource info

http://www.familyvillage.wisc.edu/lib_deb.htm

mymatemax Thu 26-Jul-07 14:31:15

Vio I can't imagine how you must be feeling, I hope you are able to find some support for you & your family.
My young cousin died aged 13 yrs from a life limiting condition, his parents say without the help of support groups, hospice, friends & family they feel they would not of coped.
Do you have friends & family nearby?

motherinferior Thu 26-Jul-07 14:36:41

Vio, several MNers have lost babies. I am so very, very sorry.

AttilaTheMeerkat Thu 26-Jul-07 14:40:49

Hi Vio,

I hope you see the following as it may prove useful to you:-

DEBRA is a charity set up to help people with the condition EB. You can contact them as follows:

DEBRA House
13 Wellington Business Park
Dukes Ride
Crowthorne RG45 6LS
Tel: 01344 771961
Website: www.debra.org.uk

They provide information, practical help, and professional help from nurses, social workers, welfare workers and a means of communicating to families via newsletters and conferences.

FioFio Thu 26-Jul-07 15:18:28

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sarah293 Thu 26-Jul-07 16:57:41

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Dinosaur Thu 26-Jul-07 16:59:03

Vio, I'm so very sorry .

Thinking of you.

2shoes Thu 26-Jul-07 21:18:29

Vio and riven
so sorry you have to deal with this. one of dd's friends had a condition that led to a short life. but boy was his life full of smiles.

MillayJ Thu 26-Jul-07 22:59:46

I'm sending you a lot of love. I'm sorry you are feeling such sorrow while loving and holding your baby. We had our baby boy (no 3) nearly 6 mths ago and he was diagnosed with down's syndrome - it isn't life threatning yet when i feel sadness of what he probably won't achieve, i'll remind myself that he is there and enjoying life. You are in my thoughts and prayers and our love to your lovely baby.

Vio Fri 27-Jul-07 01:41:27

thanks leati. i am in close contact with Debra..i know nearly everything about EB already though i didn't konw anything about EB before my son was born....its just the emotional bit...it has been 3 months since he was born.....the ups and downs in theese 3 months is just..i cannot say it..no words can explain the pain or how i feel really..

Riven...we took my boy to a childrens hospice about 2 weeks ago..it was good...i felt for the 1st time that iw wasnt alone..we are members of a club which no parents want to join.... i have been sharing my feelings with women lost babies to EB (Debra put me in contact and through an EB website)....i guess...they have been through it but i am going through it....

i just cannot even want to think about the future without my son...how to you cope the final moment? i just feel very down when things like these cross my mind..

Millay..we both have special babies...when james was diagnosed with EB..i couldnt even think...i worried that he can never play with other kids..cannot do anything really and he will be disable...i cried ..god knows how many times and then later his biopsy result came back confirming hes got the worse of the worse..i could see no future......i can never see him grow..see him walk..hear him talk...the hardest is..hearing him calling me mummy... its so hard..

theslownorris Fri 27-Jul-07 02:00:58

Hiya. My dd4 is now 17 months and she was born with a severe cardiac condition. She's had 3 operations but we have been told that certainly for the time being there are no surgical options. In fact almost exactly a year ago she was on a ventilator in intensive care and we had been told that was the end and she wouldn't survive. We are fortunate in that there may be something that can be done in the future and at the moment she is doing very well but everything is so uncertain. It's strange because I was contemplating starting a thread on the same lines as this.
I don't know what else to say.

MKG Fri 27-Jul-07 02:18:06

Vio, I have no idea what to say. Just wanted to let you know that my heart goes out to you.

Sidge Fri 27-Jul-07 13:00:47

Vio my heart aches for you. No words can make this easier for you but please know that you are in my thoughts.

My daughter has a life-limiting condition but not acutely, she won't make old bones but I try not to think too far ahead. I think I would go potty if I did. I try and enjoy each day and week and live for the here and now.

pinkcandyfloss Fri 27-Jul-07 15:32:20

Vio- so sorry to hear this. Cannot imagine what that must be like for you.

My niece died age 3 and a half but from Cystic Fibrosis and other complications and spent her whole life in hospital.
I don't really have any help but hope that you find some here x

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