My 18 month old grandson is currently in Great Ormond Street Hospital & will be there for about 3 months.

He has just finished a 5 day very intense course of chemo-therapy in readiness for a bone marrow transplant.

As I'm writing this the donor's sample is on a plane somewhere over the Pacific from Australia where the donor lives. It should arrive tomorrow & he'll get it.

I'll not go in to great detail about what he's suffering from, other than to say that it's a genetic condition that affects his blood, making him liable to spontaneous bleeding and high vulnerability to infection. Without the transplant he would not be likely to live beyond the age of 8.
If you want to know more about the condition, it's called Wiskott-Aldrich Syndrome & you can read about it at:

[url="http://rarediseases.about.com/od/rarediseasesw/a/012905.htm"]http://rarediseases.about.com/od/rarediseasesw/a/012905.htm[/url]

but it's a bit technical.

There is a website:

[url="http://jacobgiles.wordpress.com/"]http://jacobgiles.wordpress.com/[/url]

about my grandson and will give you some idea about what he's been through, and how the Wiskott-Aldrich
affects children.

We are fortunate in that a donor was found fairly quickly and, theoretically is a 100% match. However that figure is reduced because the donor is 44yr old. The younger the donor the better.

[size=4][color="#ff0000"]I'm not after your money, blood is what we want.
[/color][/size]
There are not enough people signed up to the bone marrow in the UK, which is why the bone marrow sample
is having to come from Australia. This is not uncommon, my son tells me that for other cases samples have had to come from the U.S. as well.

There is a link on Jacob's website to the NHS blood donor service, but you can also contact:

[url="http://www.anthonynolan.org.uk/donating/howtojointheregister"]http://www.anthonynolan.org.uk/donating/howtojointheregister[/url]

to register as a donor.

If you do sign up you must be under 40, and agree to stay on the register until you are 60yrs old.

When signing up they will send you saliva kit for a sample, that's all that's needed initially.


[font="Impact"][size=5][color="#2e8b57"]If you are eligible please give very serious consideration to being a donor.[/color][/size][/font]



Thanks very much for reading this, and if you do sign up you'll have the everlasting gratitude of those and there families who might benefit from you generosity.

Boothby

please give your grandson our best wishes

would love to sign up, but they seem a bit ageist to us that are over 40

Hi, do you know much about the ins & outs of this stuff?

[quote name='Bazza' post='709587' date='Feb 17 2010, 09:56 PM']please give your grandson our best wishes

would love to sign up, but they seem a bit ageist to us that are over 40 [/quote]

I know what you mean - I'm over 60 so not eligible. Apparently it costs too much to use donors over
40yr, and I imagine that as my grandson's donor is 44 and his sample has reduced the match from 100% by 10% age also plays a part in the probability of a successful outcome. There is also a 10% reduction as the donor is not of the same family. So for Jacob the match, although theoretically is 100%, the reality is 80%.

[quote name='Boothby Coggles' post='709595' date='Feb 17 2010, 10:10 PM'][quote name='Bazza' post='709587' date='Feb 17 2010, 09:56 PM']please give your grandson our best wishes

would love to sign up, but they seem a bit ageist to us that are over 40 [/quote]

I know what you mean - I'm over 60 so not eligible. Apparently it costs too much to use donors over
40yr, and I imagine that as my grandson's donor is 44 and his sample has reduced the match from 100% by 10% age also plays a part in the probability of a successful outcome. There is also a 10% reduction as the donor is not of the same family. So for Jacob the match, although theoretically is 100%, the reality is 80%.
[/quote]


Hey Coggles, had a good look through the site & it would be something i would be intrested in, do you have much knowledge on the subject as i have a few initial questions,

Donating isnt something i really thought about untill my partner had our second child, she lost alot of blood & needed a top up so to speak, it was at that point it made me realise how important things like this are for the inoccent soles in our society to survive.

You have my best wishes for your family x

I regestered for bone marrow donation about 10 years ago.
No one has ever needed mine , but would give if it was needed.

Best wishes to you and your family, and hope all works out for your Grandson !!

[quote name='Iceman2010' post='709588' date='Feb 17 2010, 09:57 PM']Hi, do you know much about the ins & outs of this stuff?[/quote]

We, as a family have been living with it for about a year, since it was first diagnosed.
Jacob suffered from bruising to his knees & legs just by crawling across a carpet!
Also he's had to make very frequent trips to hospital at Nottingham to have his blood platelets
topped up, to keep them at a level whereby he wouldn't suffer from spontaneous bleeding from wherever
on his body it could, e.g. eyes.ears, in to his brain & so on.

When you get something like this close to home the first thing you do is find out as much as you can. (The internet can be a blessing, (but also a possible curse?), when your faced with something where the possible outcome is so awful.

Can you only give a donation once in your life? does smokeing etc out me off the list??? is the website youposted the best place to sign up or something from the NHS??? - sorry for the questions but it is something ive wanted to do just havnt followed up.

[quote name='Iceman2010' post='709602' date='Feb 17 2010, 10:14 PM'][quote name='Boothby Coggles' post='709595' date='Feb 17 2010, 10:10 PM'][quote name='Bazza' post='709587' date='Feb 17 2010, 09:56 PM']please give your grandson our best wishes

would love to sign up, but they seem a bit ageist to us that are over 40 [/quote]

I know what you mean - I'm over 60 so not eligible. Apparently it costs too much to use donors over
40yr, and I imagine that as my grandson's donor is 44 and his sample has reduced the match from 100% by 10% age also plays a part in the probability of a successful outcome. There is also a 10% reduction as the donor is not of the same family. So for Jacob the match, although theoretically is 100%, the reality is 80%.
[/quote]


Hey Coggles, had a good look through the site & it would be something i would be intrested in, do you have much knowledge on the subject as i have a few initial questions,

Donating isnt something i really thought about untill my partner had our second child, she lost alot of blood & needed a top up so to speak, it was at that point it made me realise how important things like this are for the inoccent soles in our society to survive.

You have my best wishes for your family x
[/quote]

In all honesty I can't offer you much info about the actual donation procedure, but the signing up is very simple. You get a kit to provide the initial sample, (saliva I believe), & send it back to the Bone Marrow Trust
who have it tested and then the information drawn from on it is kept on record.
It's quite likely that you may not be called to give an actual sample for donation for transplant for some years or maybe never. It all depends on whether the recipient and donor's shoudl match.

I think that at one time the actual bone marrow was taken from the donor, which I'm lead to believe is pretty painful. However, in Jacob's case Gt Ormond St are applying a fairly new procedure, where only blood is taken from the donor. The necessary constituents are then taken from that sample and this is what is used for the transplant. So for the donor, it's not a great deal different to going to a blood donor session to give a pint.

[quote name='Iceman2010' post='709609' date='Feb 17 2010, 10:24 PM']Can you only give a donation once in your life? does smokeing etc out me off the list??? is the website youposted the best place to sign up or something from the NHS??? - sorry for the questions but it is something ive wanted to do just havnt followed up.[/quote]

Hi Iceman.

I'm not fully up with the donation aspects, but the bone marrow trust site will certainly tell you more than I'm able or qualified to.

I'm not sure about whether you can give more than one donation. I don't see any reason why you shouldn't but I suppose the chances of 1 donor finding multiple matches is not very high.

Either site is probably as good as the other, although the NHS site MIGHT need you to attend at a blood donor's session, whereas the bone marrow trust will send you a kit which you just post back.

[quote name='Boothby Coggles' post='709620' date='Feb 17 2010, 10:33 PM'][quote name='Iceman2010' post='709609' date='Feb 17 2010, 10:24 PM']Can you only give a donation once in your life? does smokeing etc out me off the list??? is the website youposted the best place to sign up or something from the NHS??? - sorry for the questions but it is something ive wanted to do just havnt followed up.[/quote]

Hi Iceman.

I'm not fully up with the donation aspects, but the bone marrow trust site will certainly tell you more than I'm able or qualified to.

I'm not sure about whether you can give more than one donation. I don't see any reason why you shouldn't but I suppose the chances of 1 donor finding multiple matches is not very high.

Either site is probably as good as the other, although the NHS site MIGHT need you to attend at a blood donor's session, whereas the bone marrow trust will send you a kit which you just post back.
[/quote]

Thanks alot for raising this topic, going to order the pack, good luck with everything

Thank you all for your interest, best wishes & support. The prospects for Jacob are good, especially as a match was found within a matter of months. For others though there is always the possibility of a long wait for a match. More donors will help to give a better chance for those in need.

Thank you again

An update for you.

The bone marrow donation arrived yesterday afternoon, and was given to Jacob immediately, there being some suggestion
that it had to be done by 7pm, rather than today as had originally been planned.

I had been led to believe that it would not be bone marrow as such, but the required constituent(s) of the donor's blood, however it was bone marrow for some reason.

The donation was a good deal thicker than GOS had probably encountered before, causing problems in getting in to Jacob.
The pump that is used to do the transfer could not cope and the line suffered from air locks. A new line was fitted which made things better, but for some reason the transplant team decided to do it by hand, pending their coming up with another solution.
It would normally take about 3 hours with the pump so I imagine that the "hand" method would have taken too long. How they resolved it I don't know, but they finished it in time.

Unfortunately during the switch of pipes etc. about a teaspoonful was spilled and lost. They apparently needed every drop so this was not what they wanted. However, the donation was about 7 or 8 times stronger than the minimum level needed and, according to my son, the medical staff were excited and over the moon about it. Maybe this will more than compensate for the loss.

However, to make sure that every possible drop was put to use they put the old line in to the bag to use whatever was trapped in it and also washed the bag to make sure that nothing was left behind.

So, it's now a waiting game for about 12 days or so to see if the sample has taken, and starts rebuilding Jacob's system.
Thank you a million times to those of you who have said you'll register for the Bone Marrow Register or are thinking about it.
If you're eligible please give serious consideration to making yourself available, [b][i]it could save someone's life.
[/i][/b]
Thank you again.

Boothby

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