Arlo's best life

As some of you know, our beautiful boy Arlo, was born with a genetic lung condition which has impacted his ability to breath, he had to have a tracheostomy (breathing tube in the neck) at 3 months old, and he is connected to and reliant on a ventilator and high flow oxygen, at all times. Like many people with breathing difficulties he also has a feeding peg in his tummy and is fed through that. (He can eat orally but doesn't want to or understand it due to not having it for so long as a baby but this is something we are constantly working on...)

Arlo spent 19 months in hospital from birth before finally getting him home, and we (his parents) and his grandmother had to undertake extensive medical training in order for this to happen. He is now 3 and a half years old.

We are so happy to have Arlo home, we wouldn't have it any other way, he has officially spent more time out of hospital then in hospital which we wasn't sure would ever be the case. However, we can't deny that this life comes with many difficulties and as Arlo gets older and more independently minded it's getting trickier to provide him with the best life he can have. He needs round the clock care so we (his parents) are his full-time carers, as well as having nurses overnight so that we can get some sleep, albeit being on call should Arlo or his nurse need us.

Despite being linked up to a machine he is neurologically a very able little boy, and he is overcoming the physical hurdles, that having a trachy and being connected to a ventilator and oxygen pose, incredibly well. He gets around with one of us following him with his trolley that holds his ventilator, mainly via bum shuffling but he has recently started to walk unaided (although still very wobbly and stiff) and he can speak as well as any 3 year old, which is amazing considering he has a trachy. He has managed to catch up on all other developmental milestones and we are so very proud of him.

We still do not know what the future holds for Arlo but all we know is that we want to give him everything we can and more. Arlo has 2 older brothers as well and we work tirelessly to give the 3 of them the best life possible despite the obstacles and crazy circumstance we find ourselves in. The only way to do this is having both of us at home and this has meant his father forfeiting his previous hard earned career, which has restricted our financial means.

We have a list of things that Arlo needs, a new bigger bed as his current one is the size of a cot, and a wheel chair to get around - as he is fast outgrowing his current buggy/wheelchair and it is buckling under the weight of what we ask of it! There is some help out there for things like this but the choices are limited and you don’t always get what you need, just what is available and it can take a very long time and we don't want Arlo to be held back by these things...

As mentioned above, Arlo is on what is considered to be a high amount of oxygen, he is on more oxygen than anyone else in the UK who are not still being treated in hospital. At home we have concentrators that provide endless oxygen, people on oxygen at home usually have 1 or 2 concentrators, we have 4! We generally use 1-2 at one time, depending on what Arlo needs, the other two are in order to help Arlo get around the house or out in the garden so we have to swap over to the ones best situated for where he wants to be. This is troublesome in many ways - firstly, it is difficult to find the space for all 4 concentrators, secondly they generate a huge amount of heat, it is just about bearable in the winter but in the summer it means Arlo's room is often 30 degrees or more... thirdly, the tube going from the concentrator to the ventilator is limited to 15m in length, which again limits Arlo getting about, especially out in the garden which is so important for him. So we are also looking at solutions for this - built in oxygen would be ideal with several tap points that we can connect him to giving him more freedom to roam where he wants. Also, Vents for his room that filters the air and doesn't let in pollution but still allows fresh air to be let in would be incredible. These are just a couple of the ideas... but all come at a large expense...

Taking Arlo out is a huge task, he requires a whole lot of planning, a long list of equipment and a whole lot of oxygen (Arlo gets through 1 portable tank per hour), so although we try to as often as we can, getting out is tricky! This means that Arlo spends a lot of time at home. We have a modest 3 bedroom house and we converted our living room in to Arlo's bedroom in order to get him home as he needs a lot of space for all his equipment and the bedrooms weren't big enough, so we are very limited on space.

Although we hope that Arlo will go to school one day, the best thing for him for the foreseeable future will be to home school him, and like with so many things, this is very much down to us. Unfortunately, our house just doesn’t have the space for what we want to provide for Arlo so we would like to provide a separate purpose built building in the garden where we can create an amazing nursery/school type setting for learning and play and give him a separate space in which to spend time. This will serve our whole family in many ways on top.

We're fortunate to have people regularly ask us "how can we help?" and "Is there anything we can do?" and we're always quick to say "we're fine". The truth is we feel so fortunate just to have Arlo here, we don't feel like we should ask for more, but we can't give him all that we'd like to give without help. So if you're able to support us on any upcoming fundraising plans or if you fancy raising money for Arlo yourselves that would be wonderful and if you can't, that's absolutely fine too, your love means the world to us above all else.

This go fund me page is set up as the single point of fundraising for Arlo and anyone interested in helping can be added to the team admin in order to raise funds directly. Honestly anything you can think of (run, walk, bake sale etc) would be so incredibly welcomed.

Arlo also has a dedicated facebook page for anyone wishing to see his journey to date and just what everyones combined efforts are enabling him to achieve daily and continue to beat all the odds

https://www.facebook.com/gettingarlohome/

I know that we have asked for help before and you have all been absolutely amazing, we are sorry to ask again but we are in a very tricky situation and have no other avenues.

We try to normalise everything as much as we possibly can but the fact remains that he has an incurable lung condition (Surfactant Deficiency ABCa3) which is ongoing and for which we do not know where we'll end up.

Thank you x