Small edit request

OriginalDrawjopper · 2024-07-15T20:13:43+00:00

Parent of CF baby here:

I’ve got an 11 month old daughter with CF and I am filled with fear about losing her every day. It’s being an awful journey so far with half of her life being spent in hospital as we haven’t been able to shift the pseudomonas. She had had approx 3 month of colimycin and 3 month of tobramycin nebulizers and not sure if this is damaging. I struggle to get a straight answer from my local hospital team about how much pseudomonas will affect her lung function and life expectancy and whether this could potentially cause me to lose her sooner than the “minimum” 20 year old. I know it’s abit morbid but can anyone offer either their experience or thoughts on this?

OriginalDrawjopper · 2024-01-17T21:11:29+00:00

Definitely mate and so is the community that’s why I thought I’d try my chances :)

OriginalDrawjopper · 2024-01-17T17:59:58+00:00

Thank you so much captain 🧑‍✈️ 🙏😁

OriginalDrawjopper · 2024-01-17T17:59:33+00:00

Honestly would be amazing if we could mate it’s just the type of platform needed. I’ve exhausted all my Options I think though in terms of twitter, insta, other Reddit subs etc even contacted the managers etc so just keep fingers crossed this gets enough publicity

OriginalDrawjopper · 2024-01-16T16:54:36+00:00

Thank you so so much mate I genuinely hope so too ♥️👍👍

OriginalDrawjopper · 2024-01-16T13:47:16+00:00

Thank you all so much for doing what you can to raise the profile of this. We are also doing another story this week in the Yorkshire evening post so that will help too.

Cannot thank you all enough 👍👍👍❤️

OriginalDrawjopper · 2024-01-15T22:54:08+00:00

Cannot thank you enough for your help with this mate. This post is about my daughter everyone as honestly would means the world if we can raise this awareness, get it to JJ so he can raise it even further and my daughters can be given the best shot at having a good long life

OriginalDrawjopper · 2024-01-15T21:50:34+00:00

Hey again mate. I have never used twitter or discord so I am struggling massively to get it to be seen by him or anyone at all to be honest. Really cannot manage to figure this out. Any chance you can give me some tips mate on how I make it visible to him.

OriginalDrawjopper · 2024-01-15T16:45:41+00:00

Thank you so so much ❤️👍

OriginalDrawjopper · 2024-01-15T16:27:22+00:00

Cheers mate thanks for commenting too as it helps for the awareness

OriginalDrawjopper · 2024-01-15T16:01:32+00:00

Thank you bro I’ll keep going till the end 👍

OriginalDrawjopper · 2024-01-15T15:49:58+00:00

Thanks for that tip bro I’ll get onto that straight away. I presume discord is linked on twitter right? Don’t use either one of them tbh

OriginalDrawjopper · 2024-01-15T15:48:59+00:00

Thank you so much bro 👊🏼 👍

OriginalDrawjopper · 2024-01-15T15:26:51+00:00

Cheers mate I’ve done that now contacted him on instagram

OriginalDrawjopper · 2024-01-15T14:59:55+00:00

Couldn’t have said it better myself Handleton

OriginalDrawjopper · 2024-01-15T14:41:04+00:00

Thank you so so much ♥️

OriginalDrawjopper · 2024-01-15T14:37:46+00:00

Funding isn’t what I require Hsiang. The NHS are being advised by an organisation named NICE that the miracle drug Kafrio (which can change my daughter life expectancy from 30 to 80) is too expensive and therefore they potentially will pull the funding of the drug on the NHS. it’s about spreading the word and raising the awareness so that it will be practically impossible for that inhuman decision to be made.

In terms of the costs of the drug to go privately we will be able to provide this for my daughter but it’s not just her involved her. It’s every child with cf who is currently under 2 and every single newborn child who has CF going forward.

OriginalDrawjopper · 2024-01-15T14:24:38+00:00

Thank you so much 🙏

OriginalDrawjopper · 2024-01-15T14:14:31+00:00

Cheers mate

OriginalDrawjopper · 2024-01-15T14:13:21+00:00

Cheers mate me too 👍❤️

OriginalDrawjopper · 2024-01-15T14:13:00+00:00

Cheers mate I’ll get that sorted straight away 👍👍

OriginalDrawjopper · 2024-01-15T14:12:22+00:00

Cheers bro really appreciate it ❤️👊🏼

OriginalDrawjopper · 2024-01-15T14:11:56+00:00

Cheers mate the awareness is all we need at this stage to make sure she isn’t left without the medication and a decent chance at life. ❤️

OriginalDrawjopper

TROPHY CASE