Anybody who received devastating diagnosis?

[Endofdaysarehere]

Today the community paediatrician advised that she thinks my youngest has a degenerative condition, life expectancy of 10 years, mentally and physically disabled.

What am I supposed to do now?

We’ve been referred to a specialist for confirmation. No idea how long the waitlist is? Don’t know the name of the doctor to call their medical secretary to ask.

What are we going to do? Could she be wrong? Could the MRI be wrong?

I dont know what to do.

Didn’t want to read and run - although my DD’s cancer fortunately wasn’t life changing I vividly remember the feeling of my world crashing down around me when we were told.

If you weren’t sent away with any support can you find any support groups online for the particular condition and ask questions there?

unmumsnetty hugs x

So sorry to hear this @Endofdaysarehere That's a really hard place to be. Maybe if you can say what this condition is (if you know) there may be others with actual experience of it. Or there may be parent support groups / charities out there. Sending love and prayers for you and your child.

Oh gosh you poor love. I’m so sorry to hear your news 😔

My circumstances were different- we were tild Ds1 had irreversible brain damage after an attempt on his life. I remember that visceral response I had to hearing the diagnosis - they couldn't be right, the panic. One thing that helped was focussing on the next 5 minutes and then the next - dont look ahead - easy to say I know. Ask to speak to the medics - my experience was that they bent over backwards to spend time with us answering our questions. Breathe, breathe then form a plan for the next 5-10 mins. Be kind to yourself and do whatever you need to cope. My thoughts and love to you and your dc.

I just keep looking at her and think they must be wrong.

She is behind developmentally, that’s true. But there’s still hope right?

If there is no hope I don’t know what to do.

The paediatrician thinks mucopolysaccharidosis? There is something wrong with a bit of her brain. But brains are magic? Don’t they repair and remap in ones so young. She’s only 2. She has to catch up.

I'm so sorry. What devastating news.

I know the feeling - they must be wrong it cant be true - they look ok. No words can describe the anguish you feel. Hope is always there - we dealt with keeping hope in another way (its prob not appropriate to go into it now). It may not be something you want to explore but I found getting support from a chaplin really helpful - they dont push religion on you but can be a listening ear - Im a very flakey Christian. You have had the most massive shock - breathe, eat, sleep if you can - do what you need to help yourself to be there for your little one.

Sorry to hear this it must be so hard for you.

Of course, there is always hope xx

I'm a Childrens occupational therapist and work with children and their families with conditions like that. Cry, be angry, be whatever you need to be then pick her up, love her and make sure your paediatrician refers you to all the people who will be there to help.

Firstly grieve. Once you are over the shock.
Don't underestimate Facebook groups. And allow your local
Children's hospice to support you as a family.