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Every Breath He Takes – AN URGENT APPEAL!
A campaign to save a special needs 17-year-old who suffers from a unusual condition: PRIMARY CILIA DYSKINESIA (PCD), similar to Cystic Fibrosis
The Back Story
Having PCD means ‘Po’ has no cilia anywhere in his body, and thus has no internal filtration system. He breathes in toxins and moisture from the air around him. His inability to clear mucous from his lungs means they slowly fill with fluid over time. As his lungs fill, his stamina decreases, and he requires a wheelchair to assist with mobility. We knew there would ultimately be a point in the future where he would become too ill and medically fragile to travel – his lungs having filled with fluid literally choking his every breath.
In August 2019 we arrived in Scotland for an extended holiday before his stamina was too poor to travel anymore. All he wished for was to spend more time with his best mate Xander. However, we didn’t anticipate that his condition had deteriorated so rapidly.
As respiratory sounds started to disappear from his lungs, his oxygen saturation rates dropped, and he became dangerously hypoxic – meaning that all his internal organs were starved for oxygen. He was seen by a GP on Friday 17 January and declared UNFIT TO FLY. The GP referred us on to the Acute Assessment Unit at Forth Valley Royal Hospital in Larbert. After an initial assessment he was placed on 4 litres of oxygen. A blood gas test revealed extreme hypoxia and the oxygen was turned up to 6.5 litres. He is now in the Acute Assessment Unit awaiting to be moved upstairs once a room in the Respiratory Ward becomes available. Once on the Respiratory Ward further diagnosis (including a lung function test) and much needed physiotherapy can begin.
HOWEVER, we were supposed to fly back to the US on 2 February. Po is unable to make this flight, and it could be a matter of some time before he is well enough and his lungs are clear enough to obtain the lung function he needs to safely breath and endure mobility without the aid of oxygen. As US citizens, we can’t overstay our Visitor’s Visa (which expires on 2 February) without a legitimate claim to stay.
As a single mother, I am Po’s sole carer, and due to his current hospitalization, we are applying to the UK government seeking permission to stay in the country (leave to remain) for 30 months on medical grounds, so that Po can get the treatment he needs (including a surgical lavage) to prolong his life, catch his breath, and look forward to a future.
The Costs
The fees for this emergency application for two people include:
£1052 per person Home Office Fees£2104
£1000 NHS Buy in per person£2000
£2400 Legal fees £2400
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TOTAL NEEDED £6600 GBP (+/- $8650 USD)
WE HAVE TO RAISE THE ENTIRE AMOUNT BY THUEDAY THE 28TH OF JANUARY IN ORDER TO SUBMIT OUR APPLICATION ON TIME.
The fees must be paid at the time the application is made, and as our current Visa expires on 2 February, our application must be submitted to the Home Office electronically no later than 30 January.
$6600 pounds in a week is a huge challenge, but I know that together we can do this. We can extend Po’s life and quality of life, but only with your support. Please help us if you can.
How You Can Help
Thank you for taking the time to read our story, and if you are interested in helping us save Po’s life, here’s what you can do to help.
Donate – even in all you can spare is £5. Every little bit helps and is greatly appreciated.
Share – Please share this campaign on your social media platforms with a link so that others may contribute.
Tag – please tag anyone in this post that you think may be interested.
Tell Others – we have a very short window to raise substantial funds, every bit helps.
From the bottom of my heart, I THANK YOU!!!
A campaign to save a special needs 17-year-old who suffers from a unusual condition: PRIMARY CILIA DYSKINESIA (PCD), similar to Cystic Fibrosis
The Back Story
Having PCD means ‘Po’ has no cilia anywhere in his body, and thus has no internal filtration system. He breathes in toxins and moisture from the air around him. His inability to clear mucous from his lungs means they slowly fill with fluid over time. As his lungs fill, his stamina decreases, and he requires a wheelchair to assist with mobility. We knew there would ultimately be a point in the future where he would become too ill and medically fragile to travel – his lungs having filled with fluid literally choking his every breath.
In August 2019 we arrived in Scotland for an extended holiday before his stamina was too poor to travel anymore. All he wished for was to spend more time with his best mate Xander. However, we didn’t anticipate that his condition had deteriorated so rapidly.
As respiratory sounds started to disappear from his lungs, his oxygen saturation rates dropped, and he became dangerously hypoxic – meaning that all his internal organs were starved for oxygen. He was seen by a GP on Friday 17 January and declared UNFIT TO FLY. The GP referred us on to the Acute Assessment Unit at Forth Valley Royal Hospital in Larbert. After an initial assessment he was placed on 4 litres of oxygen. A blood gas test revealed extreme hypoxia and the oxygen was turned up to 6.5 litres. He is now in the Acute Assessment Unit awaiting to be moved upstairs once a room in the Respiratory Ward becomes available. Once on the Respiratory Ward further diagnosis (including a lung function test) and much needed physiotherapy can begin.
HOWEVER, we were supposed to fly back to the US on 2 February. Po is unable to make this flight, and it could be a matter of some time before he is well enough and his lungs are clear enough to obtain the lung function he needs to safely breath and endure mobility without the aid of oxygen. As US citizens, we can’t overstay our Visitor’s Visa (which expires on 2 February) without a legitimate claim to stay.
As a single mother, I am Po’s sole carer, and due to his current hospitalization, we are applying to the UK government seeking permission to stay in the country (leave to remain) for 30 months on medical grounds, so that Po can get the treatment he needs (including a surgical lavage) to prolong his life, catch his breath, and look forward to a future.
The Costs
The fees for this emergency application for two people include:
£1052 per person Home Office Fees£2104
£1000 NHS Buy in per person£2000
£2400 Legal fees £2400
=====
TOTAL NEEDED £6600 GBP (+/- $8650 USD)
WE HAVE TO RAISE THE ENTIRE AMOUNT BY THUEDAY THE 28TH OF JANUARY IN ORDER TO SUBMIT OUR APPLICATION ON TIME.
The fees must be paid at the time the application is made, and as our current Visa expires on 2 February, our application must be submitted to the Home Office electronically no later than 30 January.
$6600 pounds in a week is a huge challenge, but I know that together we can do this. We can extend Po’s life and quality of life, but only with your support. Please help us if you can.
How You Can Help
Thank you for taking the time to read our story, and if you are interested in helping us save Po’s life, here’s what you can do to help.
Donate – even in all you can spare is £5. Every little bit helps and is greatly appreciated.
Share – Please share this campaign on your social media platforms with a link so that others may contribute.
Tag – please tag anyone in this post that you think may be interested.
Tell Others – we have a very short window to raise substantial funds, every bit helps.
From the bottom of my heart, I THANK YOU!!!
Organizer
Patricia Iolana
Organizer