Arlo's Army
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Thank you all for taking a few minutes to read about our incredible son Arlo...
After being in hospital for 19 long months from birth our son has finally come home. Albeit, with a couple of ventilators, four oxygen condenser machines, several oxygen cylinders and a couple of roomfuls of equipment on top!
A bit of background information… Arlo has a very rare genetic condition which impacts his lungs; this means that since shortly after birth he has not been able to breath without both ventilator support and oxygen flow continuously. The condition is called Surfactant Deficiency ABCa3, it comes under an umbrella term called Child Interstitial Lung Disease (chILD) which has a number of rare conditions within it, Arlo’s being amongst the 10% rarest! I’m not exactly sure of the actual current figure but I know that the number of children affected by chILD is in the hundreds globally. To make matters even more crazy one of Arlo’s mutations (caused by these genes) has never been seen before making him the only person in the world to have this particular concoction and therefore even more unknown and as rare as rare gets.
*For further background information please go to the bottom…
We have come a long way since Arlo’s diagnosis, however, Arlo’s future is still uncertain, and possibly always will be, it may be that with time and growth his lungs cope better and he becomes less and less dependent on the ventilator and/or oxygen which seems to be the direction he is heading in, as slowly but surely the oxygen requirements are coming down as is the ventilator support needed. It is possible that one day Arlo will not need these aids, or at least not continuously. Or it could be that his lungs are too damaged from disease or ventilation in the long run that he needs a lung transplant in the future. There is of course always the looming possibility that he could get an illness along the way that takes a very serious turn for the worse. Arlo’s treatment includes high dose steroids which leaves his immune system severely supressed, which means he can catch an illness more easily and struggles more to fight it off, plus his already impaired lungs are put under even more pressure when he has a simple cold let alone a chest infection or something worse…and worst of all, we could lose him for one reason or another… unfortunately we cannot rule out these outcomes, but can continue to hope for the very realistic, better possibilities.
Arlo had a Tracheostomy at 4 months old and is still connected to a ventilator continuously and still needs a considerable amount of oxygen as well. This means that although there are clever devices that can help make him portable he gets through oxygen cylinders very quickly so is very limited to the amount of time he can spend outside of the house, therefore he is housebound a lot of the time.
To be able to bring Arlo home, we (Arlo’s Mum & Dad) have had extensive training in all of the areas that are needed for Arlo’s day to day care and in the event of emergencies. Emergencies can occur if his trachy tube was to come out, or get blocked, both of which could very easily happen. There is a very low tolerance emergency exit plan in place for Arlo as he is on more oxygen and ventilator support than anyone else in the community (out of hospital, living at home) in the UK. Arlo cannot be left alone, not even for a minute and to take him out anywhere requires a very long list of equipment. We have converted our living room in to his bedroom as his original designated bedroom is far too small for all of his equipment. Plus it is a two man job to get him upstairs with all the machines that he is connected to. We have been able to bring him home despite these changes still being necessary because otherwise we were facing keeping Arlo in hospital endlessly until we are able to make these changes and this was unthinkable, we just wanted him home as soon as physically and medically possible.
Life is certainly different, and the impact of all of this on our other two sons, who are 8 and 4, is something that concerns us greatly.
Our three boys have been absolutely amazing throughout this, we could not be more proud of all of them and the way they have handled these completely life changing circumstances which is why our main focus has been and continues to be on making their life the best it can be.
In order to make our situation work with one child in hospital permanently and two at home my husband had to give up work. We tried various other ways around this, but this was our only viable option in the end. Even now that Arlo is home, we do not have a care package as yet that allows Mike to go back to work for now and life’s expenses continue relentlessly with no income. We are so unbelievably happy to have Arlo home but it does come with many difficulties.
In addition, we need to make substantial home renovations as a long term solution to this as we simply need more space to make this work, we own a very moderate 3 bedroom house, with1small upstairs bathroom. We desperately need a downstairs bathroom, a downstairs bedroom for Arlo and room for all of the necessary equipment that Arlo has to have, at the very least. Luckily we have side access and large back doors as we can’t get Arlo through the front door or in to his current bedroom as the doorways aren’t wide enough and the porch is not designed for a normal pram to go through let alone a double pram and a ton of equipment! There are other things that need to be considered as well depending on the care package we end up with. All of this is to enable us to improve Arlo’s quality of life in order to provide a safe environment, but also his brother’s lives who simply have to put up with all of this, arguably they are more effected by this than Arlo as he doesn’t know any different but they have had to accept that we can’t go out and have to be home a lot more. They deserve a home that is suitable for our life changing circumstances. The other two currently share a bedroom because the small room has Arlo’s equipment in it. Our plan was to move eventually or improve our home to make more space as they all get older. Moving now would be beyond difficult and would also mean Arlo going back in to hospital for an indefinite amount of time. We need to make our home a long term living solution and for this we need your help.
We would like to thank you for all of your support so far, thank you doesn’t quite cut it, it means more then we could ever tell you, more then you could know. Mike’s sister started this campaign as a “Get Arlo Home” fund and I want you to know that the support you’ve given us undoubtedly helped us to get our beautiful boy home, and has literally kept our family together, and Arlo always having one of us by his side. There is no better gift; we are already indebted to all of you. We are sorry to ask for more help, we wish we didn’t need to but these are exceptional circumstances as I’m sure you can imagine, and sadly, there isn’t much set up to help families with extraordinary circumstances like these. Fortunately, we are surrounded by so many wonderful people who do want to help.
I have not told you much about Arlo in this, I think most of you know for yourselves how wonderful he is and I think the photos speak for themselves. He is one of the most incredible people I have had the pleasure of meeting. He has taught us so much about life and what is important. He like all the other children with these rare conditions are an inspiration to us all… they all deserve so much more… Arlo deserves the very best we can give him…
Please see video attached to see our boys in action…
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.
Chantal, Mike, Luca, Sonny & Arlo x
*Further background information…
After having two perfectly healthy sons we went in for a third child, we had no idea that anything was wrong through the pregnancy but within moments of being born we were very concerned about his breathing, within the hour Arlo was taken from us down to the Special Care Unit. The medical professionals suspected that is was possibly down to the C-section delivery, then as his condition got worse it was highly suspected that he had some sort of infection, and then some test results showed that he did indeed have a pneumococcal infection. Our local hospital is classed as a level 1 NICU centre and it was agreed that Arlo would be better off going to a level 3 NICU until he was over the infection, so he was taken to Kings College Hospital where he was supposed to stay for a couple of days… Sadly this was not the case… After 10 days of Anti-biotics and various other treatments he was still unable to come off of the ventilator, so the doctors started to talk about rarer possibilities, they ran various tests and at 6 and a half weeks old, after the longest and most arduous wait of our lives we found out what Arlo’s diagnosis was.
From the moment of diagnosis the doctors started the only treatment regime that they know of to try to combat the symptoms of these conditions, Arlo quickly responded to the treatment and this gave us all a little bit of hope, but the journey was just beginning and the uncertainty of where the journey would go remained ambiguous. We spent another 6 weeks in NICU and were then transferred to PICU, where we had many ups and downs over the following months before Arlo was considered “stable”. Arlo moved to HDU at 11months old and remained there until we finally got to bring him home at 19 mths old, in December 2017.
After being in hospital for 19 long months from birth our son has finally come home. Albeit, with a couple of ventilators, four oxygen condenser machines, several oxygen cylinders and a couple of roomfuls of equipment on top!
A bit of background information… Arlo has a very rare genetic condition which impacts his lungs; this means that since shortly after birth he has not been able to breath without both ventilator support and oxygen flow continuously. The condition is called Surfactant Deficiency ABCa3, it comes under an umbrella term called Child Interstitial Lung Disease (chILD) which has a number of rare conditions within it, Arlo’s being amongst the 10% rarest! I’m not exactly sure of the actual current figure but I know that the number of children affected by chILD is in the hundreds globally. To make matters even more crazy one of Arlo’s mutations (caused by these genes) has never been seen before making him the only person in the world to have this particular concoction and therefore even more unknown and as rare as rare gets.
*For further background information please go to the bottom…
We have come a long way since Arlo’s diagnosis, however, Arlo’s future is still uncertain, and possibly always will be, it may be that with time and growth his lungs cope better and he becomes less and less dependent on the ventilator and/or oxygen which seems to be the direction he is heading in, as slowly but surely the oxygen requirements are coming down as is the ventilator support needed. It is possible that one day Arlo will not need these aids, or at least not continuously. Or it could be that his lungs are too damaged from disease or ventilation in the long run that he needs a lung transplant in the future. There is of course always the looming possibility that he could get an illness along the way that takes a very serious turn for the worse. Arlo’s treatment includes high dose steroids which leaves his immune system severely supressed, which means he can catch an illness more easily and struggles more to fight it off, plus his already impaired lungs are put under even more pressure when he has a simple cold let alone a chest infection or something worse…and worst of all, we could lose him for one reason or another… unfortunately we cannot rule out these outcomes, but can continue to hope for the very realistic, better possibilities.
Arlo had a Tracheostomy at 4 months old and is still connected to a ventilator continuously and still needs a considerable amount of oxygen as well. This means that although there are clever devices that can help make him portable he gets through oxygen cylinders very quickly so is very limited to the amount of time he can spend outside of the house, therefore he is housebound a lot of the time.
To be able to bring Arlo home, we (Arlo’s Mum & Dad) have had extensive training in all of the areas that are needed for Arlo’s day to day care and in the event of emergencies. Emergencies can occur if his trachy tube was to come out, or get blocked, both of which could very easily happen. There is a very low tolerance emergency exit plan in place for Arlo as he is on more oxygen and ventilator support than anyone else in the community (out of hospital, living at home) in the UK. Arlo cannot be left alone, not even for a minute and to take him out anywhere requires a very long list of equipment. We have converted our living room in to his bedroom as his original designated bedroom is far too small for all of his equipment. Plus it is a two man job to get him upstairs with all the machines that he is connected to. We have been able to bring him home despite these changes still being necessary because otherwise we were facing keeping Arlo in hospital endlessly until we are able to make these changes and this was unthinkable, we just wanted him home as soon as physically and medically possible.
Life is certainly different, and the impact of all of this on our other two sons, who are 8 and 4, is something that concerns us greatly.
Our three boys have been absolutely amazing throughout this, we could not be more proud of all of them and the way they have handled these completely life changing circumstances which is why our main focus has been and continues to be on making their life the best it can be.
In order to make our situation work with one child in hospital permanently and two at home my husband had to give up work. We tried various other ways around this, but this was our only viable option in the end. Even now that Arlo is home, we do not have a care package as yet that allows Mike to go back to work for now and life’s expenses continue relentlessly with no income. We are so unbelievably happy to have Arlo home but it does come with many difficulties.
In addition, we need to make substantial home renovations as a long term solution to this as we simply need more space to make this work, we own a very moderate 3 bedroom house, with1small upstairs bathroom. We desperately need a downstairs bathroom, a downstairs bedroom for Arlo and room for all of the necessary equipment that Arlo has to have, at the very least. Luckily we have side access and large back doors as we can’t get Arlo through the front door or in to his current bedroom as the doorways aren’t wide enough and the porch is not designed for a normal pram to go through let alone a double pram and a ton of equipment! There are other things that need to be considered as well depending on the care package we end up with. All of this is to enable us to improve Arlo’s quality of life in order to provide a safe environment, but also his brother’s lives who simply have to put up with all of this, arguably they are more effected by this than Arlo as he doesn’t know any different but they have had to accept that we can’t go out and have to be home a lot more. They deserve a home that is suitable for our life changing circumstances. The other two currently share a bedroom because the small room has Arlo’s equipment in it. Our plan was to move eventually or improve our home to make more space as they all get older. Moving now would be beyond difficult and would also mean Arlo going back in to hospital for an indefinite amount of time. We need to make our home a long term living solution and for this we need your help.
We would like to thank you for all of your support so far, thank you doesn’t quite cut it, it means more then we could ever tell you, more then you could know. Mike’s sister started this campaign as a “Get Arlo Home” fund and I want you to know that the support you’ve given us undoubtedly helped us to get our beautiful boy home, and has literally kept our family together, and Arlo always having one of us by his side. There is no better gift; we are already indebted to all of you. We are sorry to ask for more help, we wish we didn’t need to but these are exceptional circumstances as I’m sure you can imagine, and sadly, there isn’t much set up to help families with extraordinary circumstances like these. Fortunately, we are surrounded by so many wonderful people who do want to help.
I have not told you much about Arlo in this, I think most of you know for yourselves how wonderful he is and I think the photos speak for themselves. He is one of the most incredible people I have had the pleasure of meeting. He has taught us so much about life and what is important. He like all the other children with these rare conditions are an inspiration to us all… they all deserve so much more… Arlo deserves the very best we can give him…
Please see video attached to see our boys in action…
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.
Chantal, Mike, Luca, Sonny & Arlo x
*Further background information…
After having two perfectly healthy sons we went in for a third child, we had no idea that anything was wrong through the pregnancy but within moments of being born we were very concerned about his breathing, within the hour Arlo was taken from us down to the Special Care Unit. The medical professionals suspected that is was possibly down to the C-section delivery, then as his condition got worse it was highly suspected that he had some sort of infection, and then some test results showed that he did indeed have a pneumococcal infection. Our local hospital is classed as a level 1 NICU centre and it was agreed that Arlo would be better off going to a level 3 NICU until he was over the infection, so he was taken to Kings College Hospital where he was supposed to stay for a couple of days… Sadly this was not the case… After 10 days of Anti-biotics and various other treatments he was still unable to come off of the ventilator, so the doctors started to talk about rarer possibilities, they ran various tests and at 6 and a half weeks old, after the longest and most arduous wait of our lives we found out what Arlo’s diagnosis was.
From the moment of diagnosis the doctors started the only treatment regime that they know of to try to combat the symptoms of these conditions, Arlo quickly responded to the treatment and this gave us all a little bit of hope, but the journey was just beginning and the uncertainty of where the journey would go remained ambiguous. We spent another 6 weeks in NICU and were then transferred to PICU, where we had many ups and downs over the following months before Arlo was considered “stable”. Arlo moved to HDU at 11months old and remained there until we finally got to bring him home at 19 mths old, in December 2017.
Organizer
Mike Newcombe
Organizer