Hello - New member introduction

[Richard_16061]

Hello

My name is Richard. My daughter was diagnosed with a life-limiting genetic disorder at three months and has needed 24 hour care for a few years now.

I have joined this website, as our family don't really have a voice in any local, or National carers community. I hope it will prove helpful to share experiences and try to cautiously, constructively and respectfully discuss how everything really works, using a National forum.

Thank you


Richard

[lonewolf]

Dear Richard

Welcome on board. My 6-year old son has a rare genetic disorder which probably means he is life-limited, so I can fully emphasised with you and your family. My son has complex medical needs (tracheostomy & ventilator when asleep), learning disability, multi-sensory impairment (visual & hearing impairments), global development, etc.

Please feel free to offload here as we all need a release valve, no one will judge you even for dark/difficult thoughts. Please feel free to ask for advice too, as between us I think pretty much every situation has been faced and people here have lots of useful advice as to how best to navigate and negotiate the wonderful bureaucratic systems that we have to deal with.

Welcome and post whenever you feel the need.

All the best.

Emma

[Pet66]

Welcome Richard
Thankfully,Im not in your situation. My husband's in a nursing home with complex needs dementia. However my granddaughter had Stephen Johnson's syndrome when she was 3. Now 18. A real fighter. I know a little of the heartbreak an Ill child can bring.
As Emma said, vent as much as you need on the forum. We all have our heartbreaks and difficulties and it's definitely a good way to share.
The forum has saved my sanity ( almost!)

[Richard_16061]

Hi Emma

Thank you for your reply.

It looks like you have been on a similar journey to ourselves.

Our child is not currently needing ventilation, which must be an extra pressure for yourselves. A lot of the issues which your son is battling against seem similar. Our daughter has severely epilepsy, the main cause of her regressive global development and, of course, the usual chest infection issues.

I don't go in too much for the ranting, but there are times when I feel it would be better to have a single national platform for the discussion and resolution of all caring challenges - like this one.

Kind regards



Richard

[Richard_16061]

Hello Pet66

Your personal experience of watching your granddaughter growing up under difficult circumstances must have been very hard. We have tried our best to shield our parents from the extremes of our daughters illness, but it is sometimes obvious that they would have wanted to share more of the horrors and extremes.

I think, anyone in a caring situation is probably going through some kind of emotional difficulty, so I consider you to be experiencing the same difficult thoughts as myself.

Thank you for your message.

Best wishes



Richard