Rob's friends' baby - long
Aug. 20th, 2008 01:39 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
ailbheWhen 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%
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%
(no subject)
Date: 2008-08-20 12:57 pm (UTC)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.
(no subject)
Date: 2008-08-20 01:07 pm (UTC)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
(no subject)
Date: 2008-08-20 04:10 pm (UTC)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
(no subject)
Date: 2008-08-20 07:56 pm (UTC)(no subject)
Date: 2008-08-20 09:53 pm (UTC)