So a bunch of us have got together to agree to fight against middle age and to laugh at distance cycling. That is we intend to cycle from Colfes to Whitstable on the 30th September. We're hoping this finishes nicely with fish and chips and possibly a beer on the front.
None of us can guarantee this.
Arlo's full story is best worded by his Dad. So I'll copy that here:
URL for Arlo's full story - https://www.gofundme.com/arlosarmy
Copied text here:
Thank you all for taking a few minutes to read about our incredible son Arlo...
After a textbook, full-term pregnancy Arlo was born at a healthy 7lbs1oz. Sadly due to breathing difficulties he was admitted straight to NICU from theatre, and intubated within 24hours with suspected pneumonia.
Agonising weeks passed with endless tests, confusing results and baffled doctors, until finally we received the exceptionally rare diagnosis of surfactant ABCA3 deficiency. For those like us who are clueless to what this is, it is one of the rarest forms of child interstitial lung disease (chILD). This means that whilst Arlo is small and otherwise perfectly formed, his lungs cannot perform unsupported: leaving him totally dependent on a constant oxygen supply.
As it stands Arlo is a permanent resident of Paediatric Intensive Care Unit (PICU) at the King’s College Hospital London. His specific strain is so rare it has never been seen in the UK before, with only 200 documented cases globally; and along with the doctors, we have no idea what his specific journey will hold. All we do know is that there is no cure. Although uncertain, it seems the most likely path is continued mechanical ventilation whilst we try to grow him as beefy as possible to strengthen his lungs, with the hope that as he grows his oxygen requirements reduce to a level where home ventilation is possible. Down the line a double lung transplant may be an option but is by no means without its own complications.
Arlo is the bravest boy we know. He is nearly a year old and has never left intensive care or been without ventilator support. He has had to have a tracheostomy, puts up with endless tests, is permanently tube fed, has his sats measured 24/7 and is on high dose steroids which leave his immune system compromised. And yet, he smiles - the most incredible smile, at nearly everyone he meets
So… in a sea of uncertainty, scary conversations, trials and tears, we are concentrating on doing everything to give both Arlo and his 2 big brothers the best life we can.
Intensive care is no place for a child to be on their own, so in order to ensure either my wife or I are with him as much as possible I have had to leave work in order to care for Arlo and his brothers whilst we look after the boys in shifts. It’s a long road ahead, but we are looking to raise money so that Arlo can be with his family as much as physically possible. Both his medical team and ourselves believe we will get him home at some point but without any prior cases to reference we have no idea when this might be.
We would naturally have Arlo with us in ANY capacity if given the go ahead, but for now he's simply on too much oxygen for any portable ventilator to accommodate. Obviously whilst we wait, life and it's expenses go on, albeit now with very little income. In addition, WHEN we do get the green light for Arlo to come home, ideally we would make some home renovations to improve his quality of life in order to provide a safe and sterile environment on the ground floor - eg downstairs bathroom and easy access throughout to provide space for all of Arlo’s equipment and carers.
Please could you also share Arlo’s inspirational story and the incredible work that is conducted by the UK Child Interstitial Lung Disease Foundation. 10% of all funds raised will be donated to continue their incredible work and to find out more about them please visit www.childlungfoundation.org. For such a little known set of diseases it has a huge impact on the family and so many brave chILD children are fighting the impossible.
From Arlo's birth last May, it took me 7 months to pluck up the courage to post this appeal first hand (my sister and her husband have been campaigning prior to this and have done a phenomenal job, from climbing mountains, to bake sales and so much more...) and the generosity we have already been shown by family, friends and strangers alike has very literally kept us going, in more ways than one.
Any help big or small will be appreciated more than you could know.
Thank you, thank you, thank you - trust me when I tell you this boy is something else.