| Fundraiser: Sanfilippo Syndrome 10:34 - Mar 15 with 1310 views | The_Major |
Phil/Gav - any chance this can be temporarily pinned please?
Morning fellow blues – meet my nephew William.
He’s an absolutely great kid, he really is. It was originally thought he suffered from severe autism, but as you’ll read below, it was found out in the last couple of years that he suffers from an incredibly rare genetic disease called MPS III Sanfilippo syndrome that affects his brain and spinal cord. You won’t have heard of it – when I say rare, I mean really rare – as stated, only 83 babies were born with this in the UK between 2010 and 2020 – that’s roughly 1 in 100,000. He’s already lost the power of speech, and unfortunately it is a degenerative disease, and the truth is, he’s not going to get better.
It’s basically a form of childhood dementia, and despite the fact that Addenbrookes and Great Ormond Street hospitals are doing what they can, the fact remains that there is no cure.
My brother and sister-in-law are determined to keep him at home for as long as possible, and as a result, their house is going to require major alterations such as a hoist lift and wet room, as he will eventually lose mobility, and so to help pay for this, they’re asking for help.
A JustGiving fund has been set up, and I would ask everyone for a huge favour with regards to this, and that is to spread the word (It obviously helps that they’ve roped in the BBC!) – the more people who know, the more people can help.
Like I said, William is a great kid – he’s a loving affectionate lad, who, if you go round to visit, will drag you over to the sofa and give you a hug that involves clambering all over you (and bearing in mind he’s now 14, you need to be prepared for this!) – he’s an absolute whizz at jigsaw puzzles, got a fantastic sense of humour, and he’s a great big brother to my niece.
It’s not a disease that’s well known – certainly we’d never heard of it beforehand, and I’ll also put a link to the MPS Society that gives more information.
Thanks for reading.
https://www.bbc.com/news/artic
https://www.justgiving.com/cro
https://mpssociety.org.uk/cond [Post edited 15 Mar 10:41]
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| Fundraiser: Sanfilippo Syndrome on 11:02 - Mar 15 with 1238 views | Cheltenham_Blue |
Bump. So it doesn't get lost down the board. |  |
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| Fundraiser: Sanfilippo Syndrome on 14:12 - Mar 15 with 1144 views | GlasgowBlue |
Donated. All the best to William. |  |
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| Fundraiser: Sanfilippo Syndrome on 14:56 - Mar 15 with 1126 views | The_Major |
| Fundraiser: Sanfilippo Syndrome on 14:12 - Mar 15 by GlasgowBlue |
Donated. All the best to William. |
Thank you sir, much obliged. | | | |
| Fundraiser: Sanfilippo Syndrome on 17:47 - Mar 15 with 1081 views | DJR |
A friend of my wife managed to get similar work carried out for her son with Angelman's Syndrome, a very rare disease which involves no mobility. I think she converted the garage.
I wonder if this is what she got given she was a widow and not able to work because of her son's condition.
https://www.gov.uk/disabled-fa
You can get up to £30,000, and the link says that disabled children under 18 can get a grant without their parents’ income being taken into account.
It may not be enough and maybe it is one of the grants mentioned in the BBC article but I thought it worth mentioning. [Post edited 15 Mar 17:49]
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| Fundraiser: Sanfilippo Syndrome on 18:27 - Mar 15 with 1059 views | The_Major |
| Fundraiser: Sanfilippo Syndrome on 17:47 - Mar 15 by DJR |
A friend of my wife managed to get similar work carried out for her son with Angelman's Syndrome, a very rare disease which involves no mobility. I think she converted the garage.
I wonder if this is what she got given she was a widow and not able to work because of her son's condition.
https://www.gov.uk/disabled-fa
You can get up to £30,000, and the link says that disabled children under 18 can get a grant without their parents’ income being taken into account.
It may not be enough and maybe it is one of the grants mentioned in the BBC article but I thought it worth mentioning. [Post edited 15 Mar 17:49]
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Much obliged. That's an avenue they're already exploring, but as the costs over the home alterations will apparently approach £90k, they're doing this to cover the difference. | | | |
| Fundraiser: Sanfilippo Syndrome on 21:19 - Mar 15 with 1016 views | DJR |
| Fundraiser: Sanfilippo Syndrome on 18:27 - Mar 15 by The_Major |
Much obliged. That's an avenue they're already exploring, but as the costs over the home alterations will apparently approach £90k, they're doing this to cover the difference. |
The cost to the council of putting your nephew into a care facility would be many times the cost of the adaptations, so it's a shame the grant figure isn't higher.
I have just made a donation and wish your nephew and his family al the best. [Post edited 15 Mar 21:22]
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| Fundraiser: Sanfilippo Syndrome on 22:17 - Mar 15 with 991 views | The_Major |
| Fundraiser: Sanfilippo Syndrome on 21:19 - Mar 15 by DJR |
The cost to the council of putting your nephew into a care facility would be many times the cost of the adaptations, so it's a shame the grant figure isn't higher.
I have just made a donation and wish your nephew and his family al the best. [Post edited 15 Mar 21:22]
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Thank you. Every penny helps. The fund has shot up by several hundred pounds since the BBC story was posted this morning. | | | |
| Fundraiser: Sanfilippo Syndrome on 10:07 - Mar 16 with 872 views | Pinewoodblue |
Donated.
Councils do reserve the right to pay over and above the £30,000 if it is in their financial interests (will save them money in the future) if you Brother hasn’t already done so I would recommend approaching his County Councillor.
Not sure if he is aware but there is a benefit relating to council tax. They reduce the banding by one. If you are band E, for example, you will be charged as if Band D. You have to approach District Council. |  |
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| Fundraiser: Sanfilippo Syndrome on 13:45 - Mar 16 with 762 views | EdwardStone |
Donated
Make sure you shop around for a number of quotes for the work
Best wishes Major |  | | |
| Fundraiser: Sanfilippo Syndrome on 14:39 - Mar 16 with 741 views | The_Major |
Thank you, and a big thanks to all who have donated. Think it's gone up about £1000 since the BBC story dropped yesterday morning. so that's worked splendidly. | | | |
| Fundraiser: Sanfilippo Syndrome on 14:40 - Mar 17 with 549 views | Churchman |
Thank you for posting this. No, I’d never heard of it.
I’ve bunged a few £ in the pot and sincerely hope that target is reached. |  | | |
| Fundraiser: Sanfilippo Syndrome on 15:31 - Mar 17 with 530 views | The_Major |
| Fundraiser: Sanfilippo Syndrome on 14:40 - Mar 17 by Churchman |
Thank you for posting this. No, I’d never heard of it.
I’ve bunged a few £ in the pot and sincerely hope that target is reached. |
I'm not surprised tbf. Certainly we never had either, but given the odds seem to be about 1 in 100,000, that's roughly one person in a place the size of Worcester or Lincoln.
I think getting hit by lightning is only 10,000 to 1.
Thanks for donating. | | | |
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