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Original poster

Article in Closer magazine reduced me to tears

21 replies

popsycal · 16/01/2004 12:25

Has anyone got this week's Closer magazine - page 34 - My two year old weighs six stone
He has a rare condition....which is terminal
It made me cry and realise how lucky i am
I would like to help this family but don't know how to go about it

OP posts:
Carla · 16/01/2004 12:28

No, but I read about him in the Telegraph recently. If you search on their website, I'm pretty sure you'll find they've launched some sort of appeal.

Popsycle, you must be feeling terrible

Carla · 16/01/2004 12:37

Oh God, didn't mean that in a horrible way, just had visions of you having the day off and reading Closer. Sorry sorry sorry.

pie · 16/01/2004 12:39

I saw them on This Morning and they were given a specially made bed and playpen thing worth £6,000, it was really touching.

popsie if you look right at the end of the article, right at the bottom on the right had side, vertically there is some info on how to help them raise money for a special car. Can you see it?

Original poster
popsycal · 16/01/2004 12:48

thansk pie!!!
brain not functioning properly today - i can see it now!

carla - dont worry - no one took it in a bad way!

I have a little boy who looks older than he is and is still chubby. He is growing sooo tall now and it is falling off him...he is nearly 3 foot at 17 months
I got sooo upset when he was little with 'he's a big lad isnt he - what you feeding him on - lard?'
hello fatty (my grandad bless him - wish he was still around to say that now -god getting upset again)
etc etc
took me AGES to let it drift over me
he is inproportion for weight and height (91st centile) for both but i used to get sooo upset
I therefore REALLY feel for this little boy and hos family even with the tragic terminal nature of it all put to one side
It just strcuk a chord with me

OP posts:
Original poster
popsycal · 11/10/2004 20:03

I started this thread ages ago....and there is a programme on TV about this little boy tonight

OP posts:
misdee · 11/10/2004 20:05

what time

Original poster
popsycal · 11/10/2004 20:07

9pm on channel....will just check

OP posts:
Original poster
popsycal · 11/10/2004 20:10

channel 5

OP posts:
yurtgirl · 11/10/2004 20:31

Message withdrawn

yurtgirl · 12/10/2004 10:38

Message withdrawn

Original poster
popsycal · 12/10/2004 10:43

I started watching it, but being pregnant, my hormones went loopy so i stopped.

I am not worried about ds at all now, but at that point in time it really struck a chord with me.

Hope the little boy and his family are ok

OP posts:
misdee · 12/10/2004 10:45

i watched it. Archie has MOMO syndrome, only 3 (??) other cases of it known. was very upsetting to watch, the mum went to brazil tom eet another girl with MOMO who was 17, and it gave her hope that archie would survive and not die young. The girls weight leveled off when she got older, altho overweight now, she is not obese.

ArchiesMum · 20/10/2004 08:35

(grin) it still seems weird to me ppl are talking about my family ... yes u started the thread a long time ago i just now found ur site (grin) and yes there was a programme on channel 5 and also last night archie was on a programme in america i just want to highlight this .. ppl to be aware ... and who knows we may have more than just archie in the uk with this condition ... they wont research this condition .. i was told coz just archie has it .. it is not worth the resourses to find a cure or as to why .. so if i can raise awareness ,, all the better .. ty for ur kind words (grin

misdee · 20/10/2004 08:37

how is archie?

i think he is soooooooooo cute. reminds me of my dd with his curly hair and big grin.

Original poster
popsycal · 20/10/2004 09:11

archiesmum!
wow!

i read the magazine article months ago as you can see from my post. how is archie and your family?

OP posts:
bunnyrabbit · 20/10/2004 13:25

Archiesmum,
Please tell us more about Archie and how he's doing and how we can help raise awareness of his condition.

Have you set up a website for him?

BR

yurtgirl · 20/10/2004 14:21

Message withdrawn

ArchiesMum · 20/10/2004 17:13

ok ty u all made me smile .. i'm just a normal mum with a real special lad . his condition is un known and untill they start to do the research i dont think it will eer be understood.. basically its called baby giantism and he is big as u saw and as strong as an ox .. tis why he has to have a special bed .. last yr he had a heart attack because of his size and strain.. but thank god he puled thro altho now he takes adult heart medicine his weight is still going up .. but he is getting taller. he towers mollie his 5 yr old sister..and i so wish to god i knew how to do websites but i dont know or i would be there doing this site to help raise awareness and to hopefully stop the cruel sites that seem to find the fact i dont know how long archie has to live ,, and we dont ,, so like the tim mcgraw song we live life everyday as if it was ur last .. we have fun and since i came back from brazil .. i know see things different and he grabs life by the horns and just enjoys and the one thing he can do that makes everyone happy is smile .. and yanno that costs nothing.. and by god its priceless.... my email is [email protected] if any one would like to add me to messenger i would be more than willing to caht and .. well i just want to help ppl not go thro the unknown like i did

snmum · 20/10/2004 17:23

sorry, didnt see the program. just wanted to hello and welcome to mumsnet. You sound a very sorted person. My daughter has undiagnosed problems, not the same as your son, but the 'unknown is very frightening. I am glad he is doing so well, despite his set backs. that must make evrything worthwhile for you. best of Luck, Fio xx

misdee · 20/10/2004 22:08

2 yr old towering over 5 year old. hm sounds familar. dd2 isnt as large as your archie, but at the age of 2 weighs almost 3 stone, is the same height as her 4 year old sister, and wears same size clothes. i know how hard it is when people think your baby is older than he/she is, and expect them to behave in a certain way. most people are shocked by her size. she started nursery a few weeks ago, and the staff couldnt believe she is the youngest there (only just turned 2). People expect her to be walkign further than she does, but i cant go everywhere with no buggy, tho we do get to the local shops, tho she tires on the way back, and i cant lift her!!

frustrating with regarding the medical profession not doing research. how can they find out about it, and maybe help others if they wont research it more? hope you and family are doing well, and archies is doing well with his heart problems on top of everything else.

bunnyrabbit · 21/10/2004 12:19

ArchiesMum,
Ah bless him.. nothing like a smiley boy to brighten anyone's day!!

OK, as far as a website is concerned, I'm sure there a many MNers who can help you out, but if no one else replies, I would be more than happy to help with this, although this is not my field of expertise.

You need a domain name (URL) something like www.archiessite.co.uk, which we need to get registered in your name (I can sort this out for you. You also need someone to design the web site and host it for you. My brother can help out with both of these, but if you get loads of hits (people visiting) then his server may not hold up for long (I think it'll be pretty popular!!), but it's a start.

Just let me know if you really want to do this or not. I don't want to push you into something that's not right for you and your family.......

I'm going on holiday on Saturday for two weeks, but you can CAT me (Contact Another Talker - option at top of the page) if you like I'd I'll give you my phone number.

BR

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