Rob's friends' baby - long

[ailbhe]

When Rob was at university he shared a flat with a man called David who taught him to cook lasagne, and just after they both graduated, David married Caroline and Rob was best man. Some of you met David and Caroline and their fourth child, Eve, at our wedding in July 2004. Their sixth - and last! - child, Baby Seraphina, was born on 27 November 2006 at just over 25 weeks gestation - that's at least 12 weeks early.

Born to a happy, loving, frenetically busy and active family, Seri has never wanted for love and stimulation. But she has multiple medical issues. She's not yet two years old and is looking forward to her seventh serious surgery. As well as GERD/GORD (gastro-oesophagal reflux disease) she has progressive microcephaly and repeated episodes of apnea. She won't be formally labelled with Cerebral Palsy until after her second birthday, but she is being treated for it. For one surgery, her mother gowned up and went into theatre, and kissed her goodbye before she was intubated. Seri's reflux means her oesophagus bleeds. She can't eat normally. She needs bottled oxygen to assist her breathing. She needs a special sleeping support, a special bathing support, and a special sitting support. Her breathing relies on her posture.

She can't go anywhere without proper support. And the NHS cannot or will not pay for a special pushchair/wheelchair to carry this little girl with her oxygen and her feeding equipment. This isn't a Graco 3-wheeler -- this is life-saving equipment. Travelling in inappropriate pushchairs and wheelchairs can and does bring on apnea - the baby stops breathing. She can't sit upright enough to breathe.

The chair she needs will cost her family £2300. They don't have it. They managed to get the money to travel to hospital for her various surgeries, and visit her while she was in there for months at a time. They managed the pulse oximeter, with help. They feed and clothe and house and educate their other five children with no help from anyone. But this is not possible - the money isn't there.

If you can, please give something to baby Seraphina. If the NHS does suddenly pay for the wheelchair, her parents will return donations to known donors, and save the anonymous ones for the next piece of equipment - because there will be more, always.

If you can't give, please, pray. Edit: donate button deactivated as we now have all the money!

One hour later: £50 (2%) raised!
Second hour: another £70 (3%) raised!
9pm: total £250 (11%) raised!
9:30 am - 19 hours - £385 (17%) raised!
23 August, 2pm - £769.10 = 33%
30 August, 11 pm: £1045.99 = 45.5%

Comments

[barakta]

I don't want my donation returned. Please pass it onto them for anything else Seraphina or her family need, there will be no shortage of things they will need.

I am saddened and angry to see 28 years after I was born that families still struggle with the associated costs of a disabled child and their basic needs.

I don't know if the Rowntree Trust or other charities are still decent sources of funding, but if you'd like me to ask around my mum and her friends (many who have ill/disabled children) for potential sources of donations let me know in reply to this or in reply to the email address my donation came from.

[ailbhe]

"there will be no shortage of things they will need"

Truer words were never heard.

Please spread theword - email link to donate is https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=paypal%40ailbhe%2eossifrage%2enet&item_name=Seraphina%27s%20Wheelchair&no_shipping=0&no_note=1&tax=0¤cy_code=GBP&lc=GB&bn=PP%2dDonationsBF&charset=UTF%2d8

[(Anonymous)]

Assomeone else mentioned there are a number of charities that will help pay for buggies. e.g. Whizz-kidz
If the family push their OT as they should be able to identify funding for this. the NHS should also cover the cost of the buggy (or part of it) through their wheelchair services. Some Trusts will claim that they don't fund wheelchairs/ buggies for children under 30 months of age but that rule can be bent!

Fiona

[ailbhe]

I will pass on all the leads I get but strongly suspect that over the last year they've tried most things already. Which Fiona?

[submarine-bells.livejournal.com]

Yeah, ditto. Pass my donation on to them no matter what. Sounds like they could really use it, wheelchair or no.

[geekette8.livejournal.com]

I can't make your donate button work for me. Can you let me know the email address to send it to and if I need to put anything in the note to say what it's for?

[ailbhe]

If the link doesn't work either, it's paypal@ailbhe.ossifrage.net, donation, Seraphina's Wheelchair.

[geekette8.livejournal.com]

Thanks - no, the link didn't work either. It took me to a login page which wouldn't let me login, because it kept telling me to enter an amount greater than £0 without ever actually giving me anywhere to enter any amount at all!

[geekette8.livejournal.com]

Now done. LMK if there's any problem.

Don't return my donation if the wheelchair isn't needed - use it for something else for Seraphina or her family.

[ai731.livejournal.com]

I wish I could afford to donate more, but I know every little bit helps. I'm ever so grateful that our NHS has provided the extremely expensive special reclining wheelchair that my father uses.

If the wheelchair is provided, please tell Seraphina's family to use my donation for whatever else will help them most.

[sidheag.livejournal.com]

Sent something - I think as a result you will see my IRL name and address, which is OK, but please keep me anonymous; if by any chance the money comes from somewhere else for this, I'd be happy to have my donation used for something else for Seraphina. Thanks.

[ailbhe]

There are so many I'm not certain which is you! This is great!

[tiggsybabes.livejournal.com]

That is disgraceful. Now I understand why there was a baby with an oxygen tank at a Christening we went to in a sort of wooden wheelbarrow.

Please don't retun, I am saddened. You are a wonderful friend to help them out.

[khitomer.livejournal.com]

Have given what I can. I don't need it back. If the NHS does pay for the chair, I'm sure there's dozens of other things they need

[cabbagemedley.livejournal.com]

I couldn't give very much but I'll be back after I get paid this month. I don't want it back.

No returns, please

[betonica.livejournal.com]

I, also, don't need the money back. But I don't know how you're going to figure out which paypal donation is mine and tag it so that you don't return it, unless you time stamp things (my donation probably just went through a few minutes before this post)... but even so. Good luck with that. And my very best wishes for Seraphina.

[mamagotcha.livejournal.com]

Here via Serene. No need to refund. I only wish it were more. Kiss that baby for me!

[micheinnz.livejournal.com]

No refund for me either, please.

[janetmiles.livejournal.com]

via Serene. No refund, please; as other have said, there'll be more needed later.

[(Anonymous)]

No refunds please.
James

[sashajwolf.livejournal.com]

No refund for me, either, please.

[gingicat]

via Griff. We finally got our tax refund, so I can actually help for once.

[pir-anha.livejournal.com]

no refund for me either, though i don't know how you'll track this since the paramour's name is on it. do you get the same confirmation #? it's 63740423T7573981R. if you need to know the name, i can tell you in a personal message.

here's hoping enough gets collected (or the NHS pays).

[ailbhe]

Since EVERYONE has said "no refund," I do not need to track this yet.

[sierra-le-oli.livejournal.com]

No refund, please. And good luck.

[piqueen.livejournal.com]

No refund needed. I'm sure there will be plenty of good uses for it. Please keep my name/address separate from my online handle.

[radegund.livejournal.com]

No refund, please. You're doing an amazing thing.

[ailbhe]

So far, all I've done is ask for help. I'm... astonished by how well it's worked. I think all the big, big donations are in now (250, 2 x 100, 2 x 50) but the fivers really,really add up.

I'm glad I chose Paypal because it's logged and accountable. The fees are worth it for the accountability, to me (and yes, I'm paying the fees, Seri isn't).

[ailbhe]

£974.04 = 42%

£2,300 is a lot of money. We're almost halfway there.

[kaiserdad.livejournal.com]

Add me to the list, I have put your appeal on my lj, best of luck *Hugs* from me and Kaiser.

[hobbitbabe.livejournal.com]

Adding a little bit from here ...

[abrokenstarr.livejournal.com]

Was directed here by tiggsybabes and have donated. I hope that it helps.

[trizia.livejournal.com]

Have just left a bit (it'll come through as from 'spyderways)- wish it could be more, but I'm on disability.
I have also put a link to this entry in my own LJ.

[annakey.livejournal.com]

Here via trizia. No refund, ta. Good luck!

[gothwalk.livejournal.com]

Do Not Return

[annaoj.livejournal.com]

Just donated--and I don't need it returned.

[maryrcrumpton.livejournal.com]

Just donated. No need to return.

Mary x

[songster.livejournal.com]

If you even consider returning it, I shall barbecue puppies on spikes. Ha!