Thank you all for taking a few minutes to read about an incredible boy called 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 otherwise perfectly formed, his lungs cannot perform unsupported: leaving him totally dependent on a ventilator.

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.

So now you know a bit of Arlos story he is truly a amazing happy handsome little chap who makes you smile by just looking at him

Arlos amazing family by the way just make you so humble they do not moan or winge they just get on with life and whats thrown at them including a tree that fell on top of their car that was parked at the hospital and they even manage to tell that story with a smile and a giggle they really are inspirational including Arlos two brothers luca and sonny again whos lives have been turned upside down but they are right there by his side.

So i thought i could do some fund raising and decided the only thing i could maybe be good at was running so rather than the usual 5 or 10k i thought lets push to a half a marathon and to my astonishment some of my amazing big hearted (bit crazy) friends have decided to join me, we will be running the Hampton court half a marathon on the 18th February 2018 so if you could please be so kind and help us raise anything we can !!!! any donation no matter how small is greatly appreciated.

lot’s of love 💖

Amy, Andrea, Jemma, Nikki, Robert, Stacy & Vicky xxxxxx