3 kids, multiple disabilities....I'm struggling!

[Leyw87]

Hi everyone I'm new here.

I have 3 children, 15 (NB), 14 (trans male), DD 11.
15 year old has Functional Neurological Disorder, Non Epileptic Attack Disorder, Tourettes Syndrome and Hypermobility Spectrum Disorder.

14 year old has a rare genetic disease called EB, plus mental health issues.

11 Year old has the same rare genetic disease as 14 Yr old.

All three are ambulatory wheelchair users although the eldest has the worst mobility as they have seizures and paralysis as a part of the FND.

I'm struggling so much with it all at the moment. Husband is also chronically ill and I just feel like I have no support. I'm so alone 😔

Anyone else have any experiences with these conditions?

Have you had carers assessment via,children with d7sabilities team ?
Serms like you need urgentpractical support extra pair (s) of hands
What practicsl support woukd help ?
Csn they be left alone ?
Can they managd their own care?
Do you get a break?
What is needed for you to get time off?

Is there a charity for eb? Maybe they could offer support or put you in contact with other families in the same situation