ARLO’S STORY Arlo has a very rare genetic condition called ABCA3 surfactant deficiency. It is a lifelong condition whereby Arlo doesn’t produce the lung lubricant in it’s correct form to allow the lungs to expand and retract as they should, along with supplying the blood with sufficient oxygen. This in turn means Arlo requires bi-pap ventilation along with high levels of oxygen delivered via a tracheostomy 24/7. Arlo requires an extensive list of medication including permanent steroids which severely compromise his immune system as a bi-product of their advantages. What were your main reasons for contacting DIY SOS? Arlo spent the first 19 months of his life in intensive care at Kings College hospital London. Owing to the levels of support Arlo requires we were unsure whether Arlo would ever be allowed home. My wife and myself worked in shifts to ensure one of us was with Arlo day and night whilst the other was at home looking after my other two sons. After substantial training we managed to get Arlo home and converted our living room into a makeshift intensive care unit. However with no downstairs bathroom or storage for Arlo’s vast medical supplies along with a lack of adequate door access, we were fortunate enough that many of our friends and family contacted DIY SOS to see if help was possible. What has been your experience of the Radic8 technology and have they helped Arlo? The units have fitted into our life seamlessly. So much so that they are genuinely not even noticed anymore. We run the units continuously since installation and thus far after 4 months use we are delighted to say Arlo has had his most
healthy winter ever, with only one return trip to intensive care for a precautionary measure. Would you like to see the Radic8 technology in the medical facilities that Arlo has to visit? If yes, why? 100% After 19 months living n intensive care we have seen first-hand all too often how quickly viruses spread through hospitals despite all their Arlo has has contracted contracted 5x as many best measures. Arlo many virusesin inhospital hospital as as opposed opposed to being at home. viruses home. Currently a lot is done about direct and indirect disease transmission routes (touch and surfaces) but not very much about airborne and droplet transmission routes. What are your thoughts on this? Cost is obviously the main factor in NHS, however my personal experience is that to overlook the airborne threat is a false economy and the adverse effects can cost far more in terms of disruption, hard cost of treatment and patient discomfort. In intensive care environments it is not an exaggeration to suggest the consequences can be fatal. Do you have any words of advice for other parents who have children with compromised immune systems? As tempting as it is to try and protect Arlo in a “bubble” realistically it simply isn’t possible. We are determined to give Arlo as full and varied life as possible so our approach has been to set some hard and fast rules concerning hygiene that have simply become the norm and to be extra vigilant when it comes to others with known bugs. That said, it’s impossible to be 100% certain of everything whilst trying to live a normal life. Having this tech in our home allows us to sleep a little better knowing that we have operating theatre levels air filtration in our home giving Arlo that extra layer of unseen support. Arlo’s Dad
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