the nicholas appeal

- English -

Resident Freddy
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Hey guys.

As some of you may know, my nephew was takin ill suddenly just over a year ago. Our family has decided to release information via a website to try inform people of a rare disease called 'alpers'. So rare there are only 2 other cases in the world along with Nicholas's. I would be greatful if you could spare a moment to have a look.

http://www.thenicholasappeal.co.uk/

thanks.
 

Naffets

Can't get enough of FH
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A truly moving story. Will be donating after payday

If you need any help with informing people about the appeal just let me know, i'll do all I can
 

- English -

Resident Freddy
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Would be fantastic if you could. The site only went live earlier tonight. Every little helps as they say.. Ideas on other events we can do would also be nice if anyone has some.
 

Gamah

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- English - said:
Would be fantastic if you could. The site only went live earlier tonight. Every little helps as they say.. Ideas on other events we can do would also be nice if anyone has some.

Mate, my feelings go out to the boy, I know I am normally inhuman on these boards but I do actually care about some things. it's dreadful to have a deabilitating condition and to be fair I would hate to have to deal with it myself. 3 cases in the world is !!!

BTW I have reported this post with the comments "Please sticky"
 

Tilda

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Jim, you know you have my heartfelt sympathy.

Theres a typo on the "nicks story page" His chest was InTubated, not incubated.
 

Ezteq

Queen of OT
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I wish you and your family everything you need for Nick, i remember when you first posted about his illness, the website is awsome btw.

Just a thought but we've just had children in need and tbh if ever there was a child in need its your little guy, can you get some money off them? i mean i know they send a lot of it to foriegn children but surely they have donations put aside to help people like you guys?
 

cHodAX

I am a FH squatter
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Poor little fella, it makes you realise how fragile life is when you read things like this. I will make a donation in the next couple of weeks.
 

- English -

Resident Freddy
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Ezteq said:
I wish you and your family everything you need for Nick, i remember when you first posted about his illness, the website is awsome btw.

Just a thought but we've just had children in need and tbh if ever there was a child in need its your little guy, can you get some money off them? i mean i know they send a lot of it to foriegn children but surely they have donations put aside to help people like you guys?

doubt we would be able to get anything from children in need, although ill make the point forth to my sister or her friend who are the main trustees of our appeal. We know nothing can be done to make nicholas back to how he was... we are just hoping he can have some quality of life for the remainder of his life.

Beleive me... being a very close uncle who saw and lived with nick every day makes me sick and so upset to see how he is now... I miss every small and little thing he would say, every peice of mishielf he got upto...(he refused to let his mummy change his nappy but would lie down and be quiet while i did it)... I used to bring him chocolate buttons home from working weekends, ill never forget his face when he saw and ate them... (there was more chocolate around his lips than in his belly), but that doesnt matter its knowing he liked them.

Some of my favourite pics are on my dads website which is a train-pic website(booring), although he has done a special website which you can see more day-2-day stuff of how he was..

http://john-robinson.fotopic.net/c1139305.html

have a look, its quite sad.. but still i do see nick near enough every day and still try to be the same as i was with him... although he isnt the same, everybody loves him EVEN more.. we are making the tiem we got special.

Thanks for your help
 

Cadiva

Part of the furniture
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Ezteq said:
i mean i know they send a lot of it to foriegn children but surely they have donations put aside to help people like you guys?

Children in Need helps children in the UK, not abroad, so I'm sure they would listen if you did write to them.

http://www.bbc.co.uk/pudsey/

If you need a specific amount of money for a specific thing they're probably also more likely to be able to help out, I know that the Rainbow Trust is one of the organisations they have provided funding for at the Northumbria home.

Seriously, it would be worth getting in touch with them, they make small grants as well as the big ones.

Also, have you spoken to your local council? They also usually have some funding set aside to help out when people need facilities specifically built. During my years as a journalist I've done two stories about people getting extensions built on their houses specifically for disabled children and the council has paid for the majority of the work being done.
 

Morphius

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My feelings go out to you and your family, I hope you can reach that total u need and try and get his life as close to normal as possible. Just donated, every little counts.
 

- English -

Resident Freddy
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Morphius said:
My feelings go out to you and your family, I hope you can reach that total u need and try and get his life as close to normal as possible. Just donated, every little counts.


cheers! the total is slowly going up
 

Case

Fledgling Freddie
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Before I start don`t take this the wrong way but before parting with money or watching others part with their money I must ask a couple of questions firstly see:

"The combination of the severe epilepsy and the on-going brain disease, which is causing the seizures, leads to increasing loss of skills and awareness. The infant often develops some physical stiffness (spasticity) and subtle involuntary movements especially of hands, feet, face and head. The condition is not a painful one and the child will be unaware of what is happening. The course of the disease is usually rapid and eventually the combination of the diseased brain and increasing physical weakness becomes too great to sustain life, and death usually occurs within a year. Parents and carers will be aware of the child’s increasing frailty, and death is usually relatively peaceful and expected when the time comes. "

and

"Although there is no treatment yet available that can stop the disease, every effort is made to treat the symptoms. Drugs are given to try to reduce some of the seizures, treat infections and relieve any muscle spasm, pain relief and sedative drugs can be given if required and feeding can be assisted.

Physiotherapists and others can advise parents on positioning, seating and exercising the limbs to maintain comfort. Though not scientifically proven, many children gain some symptomatic relief from some of the complementary therapies such as cranial osteopathy and massage. "

Now I admit I'm a cynic but not tight I already donate part of my monthly salary to various charities mostly animal related, however, this appears to me to be a cynical attempt to make some money out of people because their baby has a rare condition, explain to me how any of the stuff meant to be bought with these proceed's will make any difference to the quality of life of this child?

Explain to me exactly how building an extension to someone`s house will help a baby that more than likely won`t even live to see thw building work finished will help it`s quality of life?
 

Sparx

Cheeky Fucknugget
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have you also registered as a charity? if not you could be in for alot of trouble

Best register as a charity, also means you wnt pay tax on the donations etc
 

Jeremiah

Fledgling Freddie
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Sparx said:
Best register as a charity, also means you wnt pay tax on the donations etc

It also means you can claim an extra 28% back on donations from those who pay income tax.
 

- English -

Resident Freddy
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It is a professionally registered charity with solicitors involved. I havent done it, its my sisters friend who does it who will have all the necessary paperwork needed. This is no fake scam to make money.

"Now I admit I'm a cynic but not tight I already donate part of my monthly salary to various charities mostly animal related, however, this appears to me to be a cynical attempt to make some money out of people because their baby has a rare condition, explain to me how any of the stuff meant to be bought with these proceed's will make any difference to the quality of life of this child?

Explain to me exactly how building an extension to someone`s house will help a baby that more than likely won`t even live to see thw building work finished will help it`s quality of life?"

its alot more complex than your little paragraph. I
You seem to miss key points when noting the extension. Are you aware what a disabled child is like? '. My sistser has moved away from our house especially as the house we are in atm is not adequate for a disabled child. My nephew or baby as you described him is 3 years old, and due to steriods hes the size of a 6 year old. My sister can barely carry him. And as time goes on he will grow taller and heavier. It wont be possible for me to carry him upstairs like we do atm. If you cant understand how this will make his life better then id rather you not reply.

Sensory stimulation is the only thing we think nicholas notices which is still rare. Once again this equipment is not cheap and as a single mother how can you expect her to survive, sure our family helps when we can, but arent charities used for this sort of thing?

Derian house and rainbow trust will also receive a 10% donation each. As stated derian gets less than 4% from government funding, Its charities likes ours who give something back to them after needing there services so much that keeps them running.

hope it answers your question. if not say and ill re answer them.
 

fl3a

Can't get enough of FH
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Case said:
this appears to me to be a cynical attempt to make some money out of people because their baby has a rare condition
trust me, if your child was dying, you wouldnt be thinking 'how can i make lots of money out of this!?'
 

Sparx

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- English - said:
It is a professionally registered charity with solicitors involved. I havent done it, its my sisters friend who does it who will have all the necessary paperwork needed. This is no fake scam to make money.


Cool, i wasnt making the comment to say your a scam at mate, was suggesting because it does benefit the charity to be registered for tax reasons etc.

If you receive money from people and dont claim it then you will be fined etc if your not registered.

Good to see you got that sorted
 

- English -

Resident Freddy
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Sparx said:
Cool, i wasnt making the comment to say your a scam at mate, was suggesting because it does benefit the charity to be registered for tax reasons etc.

If you receive money from people and dont claim it then you will be fined etc if your not registered.

Good to see you got that sorted

solicitor (sp) fees have cost over £1100
 

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