A touching story ...

[Oxyjan]

A boy of 11 with Interstitial Lung Disease now has much more freedom to be a kid ...

dailymail.co.uk/health/arti...

[maggie44]

What a nice story - a good outcome for the little boy and a satisfying experience for the design intern. How sad that such a young child should have this horrible disease. I have it but at least I have had a full life until my early sixties. I am sure he did find the other bag uncomfortable to use. I do and I am 5ft 8 in !

Maggie

[Oxyjan in reply to maggie44]

You're quite right. So sad to see a child with this condition. I was quite shocked to learn that children could get it. Amazing to see to see how lively he is with this much more portable system. : )

[lavender1]

Saw this boy on television last night and it was indeed very enlightening and humbling oxyjan and to maggie44 yes it does tend to put our own illness into perspective -makes me feel I should give up a bit on the moaning. Well done Lenny and Hannah!

[Oxyjan in reply to lavender1]

Such a brave kid to be facing the world with this condition but at least he'll now be able to experience some of the childhood freedoms we've enjoyed.

[tanyamarie]

That is so sad but he looks a really lovely kid doesn't he? Funny how something so simple, like a bag can make the most significant difference.

[Oxyjan in reply to tanyamarie]

I agree. The difference to his life clearly is amazing. I was just so shocked that children can get this terrible disease but at least now he'll be able to experience some of the freedoms his friends enjoy.

[sitstand]

So sad when children suffer though I do not know what nterstitial lung disease is, still terrible to see for a life that has not even started and it really does make me think things are not so bad with my own life looking at the story.

M

[Oxyjan in reply to sitstand]

Interstitial Lung disease is the progressive scaring of our lungs over time. It's not fully understood but sadly there is no cure. For me as a 44 year old male it's so so to see a child have this condition knowing exactly what he must be going through each day. This bag seems to have transformed his life which is wonderful.

[sitstand in reply to Oxyjan]

Oh so what reason for lung scars is poorly understood that makes it hard to treat I suppose which makes anything that does help even better.

Thank you for explaining and hope that your own scarring does not get any worse.

M

[tanyamarie]

My dad has it and seeing him suffer is hard enough let alone a child bless him.

[Oxyjan in reply to tanyamarie]

Sorry to hear this. I do hope his life is comfortable. J

[tanyamarie in reply to Oxyjan]

He is an inspiration honestly. He never complains, he is a star, He is end stage and we are making the most of every day. We laugh as much as we can, the perfect tonic I reckon!

[Oxyjan in reply to tanyamarie]

It sounds like you have a gem of a father. I was diagnosed in April of this year and at the very beginning of this journey. If I may could I ask when your father was diagnosed. This is all still a blur for my family and I. The future seems so uncertain.

[tanyamarie in reply to Oxyjan]

Its IPF that dad has and empysema, so double trouble. Diagnosed early 2008 and they say it can be in you for a few years before symptoms. Ive written a few blogs since I joined here in May charting dads up and downs so feel free to check em out if you want.

I'm sorry you have been diagnosed too, but there is hope I promise if you see the right professionals and get the right treatment x

[Oxyjan in reply to tanyamarie]

I'm under the care of the Royal Brompton and I have full confidence in them. The steroids and immunosuppressants have slowed my disease down incredibly but still life is changing. I now need oxygen to walk up a flight of stairs for example. My 7 year old son and wife have been fantastic as have my family at large but its tough for us. The forum is a wonderful place. I have read a number of your comments in the past and feel you're a real asset to the forum. Take care and bye for now, J

[tanyamarie in reply to Oxyjan]

My 2 year old woke up so had to disappear last night I'm afraid. I'm so glad you are getting good care and ur disease is slowed down, so important. It's good to have a support network around you. I like this forum, it was just what I needed back in May and I have made some life long friends on here.

Look after yourself as best you can and speak swn x