New and caring for a rare bear

My son is 6 and 7 in jan. He has a couple of rare syndromes mmihs megabytes microcontroller intestinal hypoperistelsis syndrome.
Pbs prune belly syndrome.
Copd due to the Airways to his lungs being under developed.
Brittle bones but manages this quite well.
He is in year 2 at school but struggles on reception work.
He gets fed through iv feed called parental nutrition and he can’t manage to be fed through a gastronomy and the jeg didn’t work either. He has just been in alder hey but luckily we can do iv meds at home. He can catheterize himself i taught him this well over a year ago. He know needs to be on iv fluids at school. School nurses weren’t any help but deputy head put in a referral and got somebody else involved so they are pointing in the right direction but we are far from there.
Hope everyone has a brilliant Christmas and New year. :smiley:

Richard, that sounds a lot to deal with.
Are you aware of NHS Continuing Healthcare?
Claiming Disability Living Allowance?
Had Needs Assessment from Social Services?

Hello Richard and welcome to the forum

Your son sounds like a trouper, that’s a lot for a small child to deal with and I imagine caring for him is extremely full-on for you.

As Bowlingbun suggested, I hope you’re supported and are able to have some time for yourself as well, your health is important too. Have a look through our help and advice pages for practical suggestions and tips:

Wishing you and your family a Merry Christmas


Sending you warm and positive thoughts Richard.

My brother, who I care for, has problems with his waterworks and it takes over his life.

Hope you and your son are OK.