03 - When the Unthinkable Happens - Our Journey to Save the Twins

What happens when your worst fear becomes your reality - not once, but twice?

In this raw and deeply personal episode, I share the story I never imagined I’d have to tell. This is the journey of my twin boys: from their diagnosis with the same rare, life-limiting genetic condition as their sister, to the desperate race against time for a treatment that didn’t yet exist in the UK.

It’s a story of impossible decisions, international hospitals, family separation, and the kind of strength you only discover when your children’s lives are on the line. You’ll hear about our treatment journey to Milan, the emotional toll of being torn between countries and kids, and the earth angels who showed up when we needed them most.

This isn’t just our story - it’s the reality for so many medical mums navigating systems that weren’t built for the intensity of our lives. If you’ve ever felt alone, if you’ve ever had to fight harder than you thought possible, or if you just want to understand what that fight really looks like… this one’s for you.

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Transcript

Hello my lovelies and welcome. My name is Leah and I am the founder of Bravely Together. This is my six-part mini-series for mums who are navigating the most unimaginable thing any parent can face. 

Having a child with a life-limiting condition, complex medical needs, or any additional needs really that just add to that level of care that our children require. Today is episode three and I'm going to be sharing my boy's story. So I think I mentioned in previous episodes that I was heavily pregnant when we received my daughter's diagnosis.

I think I was around six months pregnant and it was made very clear to us at the beginning that this was a genetic condition and that this pregnancy had a one in four chance of also being affected. The twins were identical so they had the same odds, one in four chance of being affected. I was offered to be tested whilst I was still pregnant but seeing as I had very easily and quickly made the decision that I would not be doing anything in terms of terminating the pregnancy should they have the condition, then it seemed pointless to me to put myself and all of us through that at that moment in time. 

And so we just continued with the pregnancy as normal because everything was absolutely as it should be and there seems no reason to to change that. And honestly I just wanted to be in that ignorant bliss. I truly felt like it couldn't get any worse. 

We couldn't possibly be that unlucky that all three of our children would be diagnosed with this awful life-limiting condition and so yeah I wanted to live in that ignorant bliss for as long as possible. So I say we carried on with life as normal but life was far from normal and obviously as my pregnancy progressed my daughter was regressing and that meant that she required a lot more support in terms of physically being moved and carried around and heavily pregnant with twins that became very difficult for me. And so at this point we did have to start looking for people to come in and help. 

My mother was in a lot of pain so I needed that support. This was not easy to get as I'm sure anybody who's been in this situation will know trying to get care and support to come into the home and help you is not easy to come by and it's a fight as is everything when you're a medical mum. Everything is a fight but we were able to get some help through a charity which was amazing.

I would have been absolutely lost without it and it just allowed me that tiny little space of breathing room to actually start preparing for the birth of twins because that's daunting in itself as I'm sure you can imagine. So I did actually end up going in to the hospital a few weeks early to be induced. I can't remember why that was but anyway I was induced. 

It was a very long drawn-out labour. It was not fun by any means but the boys eventually arrived by emergency caesarean and both very well and yeah we just absolutely embraced that whole newborn baby bubble. It was very surreal having two tiny newborn babies but anybody that's had twins will know just like it's just well what a blessing to have twins. 

It really is and they were very keen to test the boys as soon as they were born but I wanted to continue in my ignorant bliss and so we said no. We said we just wanted to have a few weeks of enjoying them, of not knowing, of believing that they were absolutely fine because as newborn babies they were. They had no symptoms at that point whatsoever and so after a couple of weeks of recovery for myself we decided to go on a little family holiday and now thinking back that just seems crazy that we took newborn twins and our disabled daughter on holiday. 

Like what were we thinking? It was not a straightforward holiday. Quite a few things went wrong. My daughter ended up going into hospital whilst we were away and actually we just wanted to get home so in hindsight that probably wasn't the best idea but I think we were just trying to escape. 

Escape what was going on in our world and to try and just enjoy what we had in that moment. Anyway a few weeks later we were at Great Ormond Street Hospital for an appointment for our daughter. Obviously we had the boys with us and it was then that they said you know you're here would you like us to now take the boys blood tests so that we can test them to see what's going on. 

At this point the boys were coming up to six weeks old and so we felt like we couldn't live in that ignorant bliss state for much longer and we probably did need to find out what life had in store for us and so we agreed to do the boys blood tests and as I shared in the previous episode we were then in hospital with our daughter, our local hospital and our consultant came and said that she had the results for the boys tests and would we'd like to go to a private room to discuss them and at this point I was just done. I knew as soon as she came in that room what she was going to tell us so I was just like just tell us here it's fine but she was very adamant that she wanted to go somewhere a bit more private and so yep we went off to a private room me my husband and our consultants and I believe there was somebody else there I can't remember for the life of me who that person was I think it was like a health visitor or somebody along those lines who was there to just provide support and yeah she then break the news to us that our worst fears were confirmed and that both the boys were in fact also had the diagnosis of metachromatic lupid dystrophy. I can't even tell you how how I felt in that moment because honestly I think I've just blocked it out. 

I was so sure that we couldn't possibly be that unlucky that that wasn't even gonna happen and when it did it was just unbelievable and obviously heartbreaking but all was not lost because we had of course searched for answers when our daughter was initially diagnosed even though we were told that there was nothing that could be done we of course searched the internet as any desperate parent would to find something there had to be somebody out there working on a treatment for this condition in in another country somewhere and we came across a few a few things a few trial treatments so of course we knew that when the boys they received their diagnosis that we had options and we had time and with a condition like this like MLD time is so important that earlier we can get that diagnosis the more chance we have at having successful treatment and essentially saving the child's life and so if we thought life was busy up until that point we were very much mistaken because the foot then just hit the accelerator because as I said time is of the essence and so it was full steam ahead to find out what treatments were happening what what ones would potentially take the boys on and fortunately our consultant was really on it and she'd already made contact with Great Ormond Street who had a contact with the team in Milan Italy who were currently coming to the end of a trial treatment that they'd been working on and so yeah there was a lots of phone calls lots of meetings lots of paperwork lots of bureaucracy and money talk because at the end of the day unfortunately all of these things come down to money we had to think about fundraising in case it was something that we would then have to fund ourselves just so many things to think about that you just wouldn't even think would be on your plate when you have newborn babies and all the time my daughter was in and out of hospital with different we were just navigating her condition and the way it was panning out she started having seizures so we had to have some tests run for that and medications had to be brought in to help support her and we had to learn how to manage her care at home all whilst trying to plan to get this treatment to essentially save our boys lives and so eventually the Milan team came back to us and said that they had had a discussion because essentially the trial they were running had actually ended but as there was no other viable options for the boys then they were willing to treat them on compassionate grounds this then meant a whole host of extra conversations around who was covering the cost but fortunately the it was all worked out in our favor and the only thing that we had to fund was getting ourselves out to Italy and paying for our accommodation and living expenses whilst we were out there the actual treatment and the hospital care was covered and so in the January after the boys were born we then had our first trip out to Italy to meet the team for them to run all the necessary tests to confirm that they were happy to give the boys this treatment now I'm sure you can imagine this was a very intense trip for us because this was essentially them saying whether or not they were going to give our boys an opportunity at life because there were no other treatments available at that time and this is the one that had the best success rate that we had seen even though it was in such early stages at that point and yeah we were out there for a week I believe there was a lot of tests it was as I said very intense obviously we had two babies to get through all of these tests we were in a foreign country they spoke very good English but there was still a language barrier it was difficult to always understand what was going on and why that was happening and so after a week we were very glad to be returning home and they had told us before we left that they were willing to treat the boys so we were obviously hugely ecstatic that the boys now had this opportunity that was essentially life-saving for them and so yeah we went home for a few weeks to prepare because this treatment wasn't a quick fix it was the boys having to go into isolation essentially the treatment is a bone marrow transplant by which they then correct the faulty cell that causes the condition that they have and yeah we had a very difficult decision to make in terms of what we were gonna how we were gonna do this logistically now my daughter was deteriorating quite rapidly at this point and so the thought of moving to another country with my boys which had to be done it was to save their lives we had to go I could not imagine leaving my daughter behind and so we went through a lot of rigmarole to be able to fly her out there with us and to have all the provisions in place so that she would be comfortable out there the accommodation that we were staying in had to have a hospital bed supplied for her we had to contact um the company that supplied her feed because she was tube fed at this point to get enough feed out there for her for the duration of our time um we had to get the permission for all her drugs to be transported out there we had to get permission for her to even be on the flight so many things to think about I can't even remember them all now and honestly I don't know how we even managed to to do it all we had a lot of help and support from some incredible people even more so when we actually arrived in Italy so there had been other children that had obviously received this treatment out in Milan and we were lucky enough to then meet some of those families when we then returned back out there and there were also some people living in Italy who through different means had heard about what was happening at the hospital that these families were coming from across the world to have this treatment for their children and these families basically extended their love and support to us and yeah just took us on as their own family I suppose whilst we were out there they would pick us up from the airport they provided car seats and push chairs and toys all the little things that you need your home comforts when you are put into a situation like this and honestly I don't know how we would have navigated that time out there without them because they were incredible and so yeah we actually flew out a few weeks early before the boys treatment was due to start the boys were actually being treated at slightly different times so that it wasn't quite so intense for us with having both the boys going through the treatment at exactly the same time so Oscar was the bigger stronger twin and so he was to have treatment first and then six weeks later it was planned in for Felix to then start his treatment because by that point Oscar should have been over the worst of it and been on the mend and then we would have been able to focus on Felix as you will find out that's not quite how it worked out and so yeah we flew out a few weeks early so that we could get our daughter settled before the treatments all began and it became clear to us very quickly that she was not comfortable out there she wasn't settling I think we felt on edge because we didn't have the medical support sister around us that we'd got used to for her and we also had a great hospice back in the UK that really helped and supported us and her we had a great care team that would come into the home and help support us and by moving out to Italy of course we lost all of that so we decided a really difficult decision that my husband would fly back home to the UK and stay with my daughter stay with our daughter and I would stay in Italy with the boys and that's just how we were going to have to do it so as I'm sure you can imagine saying goodbye to my daughter and my husband for them to go back to the UK it was really difficult even though we knew that's what was best and of course that then meant I was out in Italy with my boys about to embark on a really intense and scary treatment that we didn't fully understand and that we had signed lots of paperwork to say that we understood the risks of but as I'm sure any of you medical mums listening will know we do what we do best and we just pull up our socks and we get on with it because we have to do what we have to do right we have to do what our children need in that moment and that was what they needed my boys needed me in Italy and our daughter needed her dad back in the UK and so yeah that then became our new normal living in two different countries and so over the course of time that we were out in Italy we had a few friends and family therefore come out and support me because of course I couldn't do it all by myself I needed support whilst I was out there and so a very close family friend at the time actually committed to coming out there for the duration of the boys treatment and very quickly was given the name of Nonna by all the staff nurses and doctors and this then meant that one of us was always with one of the boys which you'd think would make life easier but it was still very very difficult to navigate so Oscar went in for his treatment first and when I say he went in for treatment this was a closed door isolated ward it had to be sterile it was he essentially had a bone marrow transplant so he had all his bone marrow removed and then he received chemotherapy to completely knock out his immune system and so yeah he was obviously at high risk of catching anything and everything so he had to be in a sterile environment and we couldn't have guests and visitors and he had to stay in that room he didn't leave that room for a long time and so I can't remember exactly how we did it but it was something along the lines of I would be in the hospital all day with Oscar whilst Nonna was back at the apartment with Felix and then in the evenings we would switch over so I would come out of the hospital and take over care for Felix Nonna would go into the hospital and take over the care of Oscar I would get to go back to the apartment shower eat put Felix down to sleep get some sleep myself and then wake up the next morning to go and then swap with Nonna again to do it all over again and yeah the treatment seemed easy at first he had the bone marrow harvest and had an intense course of chemotherapy over five days I believe and we kind of kept waiting for his hair to fall out to see some signs of the chemotherapy affecting his system and it took a while for those things to happen but when they did start to happen it all started to go downhill very quickly and he did not react well to this treatment at all hello my lovelies I just want to take a moment to say if you're listening and this is resonating and you feel like this is a space that you need to be a part of then please know that you don't have to do this alone that's why I created Bravely Together a private space just for us medical mums a place where you can feel held heard and honestly just human no judgment no pressure just gentle tools lived experience and real support from someone who gets it because I've lived it too if you feel like you're carrying everything and don't know where to put it down this is your place come and join us at bravelytogether.co.uk or just click the link in the show notes I would love to welcome you in all right let's get back to the episode so just to take it back a second he had his bone marrow taken it was taken away to the lab to have the corrected cells replaced during which time he received a course of chemotherapy to wipe everything out of his system and then the corrected cells and his bone his own bone marrow was given back so it wasn't a bone marrow transplant in that he received somebody else's he did have his own bone marrow back but they had just corrected the faulty gene that had caused the condition of MLD and so that was all done in the space of I believe it was five days it was definitely less than a week it was all done very quickly then it was a case of just letting his body rebuild and to get itself back into flow and build up his blood counts and all those things again and that's when it all went horribly wrong really for Oscar he as I said didn't react well and he was on a multitude of different medications every day it felt like they were coming in with a new medication and I was trying to ask and to understand what was going on he was so poorly to the point where he couldn't eat anything he was barely drinking anything he would just sleep on me and whimper and he used to have a dummy but he wasn't even able to keep a dummy in his mouth because it was just full of sores and and would just bleed at the slightest touch and it was just awful to see because essentially I had taken a very happy healthy baby into that hospital and now he was a really poorly baby and in a lot of pain on a lot of medications and it was just heartbreaking to see really and I was trying to understand what was normal I knew this was a trial treatment but essentially he was child number 22 in this trial and so I knew that they had some idea of what this looked like for other children and I knew that what they were seeing in Oscar wasn't what they'd seen before and it's funny because even though I can't speak Italian very quickly I started to to understand what they were saying when they were talking amongst themselves about my child and yet when I would ask them to explain to me in English I wasn't given much information let's just say that and then things took a sudden turn in that he became so poorly that we actually ended up having to rush him to another hospital in Italy which considering I had been told that he had to be kept isolated in this room because he had no immune system his blood counts had not come back up and then they were telling me that they'd called an ambulance to take him to another hospital in Italy was absolutely terrifying firstly I had no idea where in Italy we were going it was just so disorganized disorganized honestly now I can laugh about it but at the time it was horrific this ambulance crew turned up to take him to another hospital obviously they were all speaking in Italian I had no idea what was going on he was in an isolated room that everybody had to be sterile and suddenly I had like 20 people in the room all in normal clothing I was just seeing all these germs around him and just panicking that he was going to catch something they got him onto a different hospital bed to transport him down to the ambulance they actually got lost in the hospital he was on oxygen at the time and the oxygen canister that he was using had run out so then they were running around trying to find another oxygen canister for him when we actually got into the ambulance I didn't understand what was going on but about four or five doctors came with us from the hospital in the ambulance across to the new hospital now I hadn't had much to do with hospitals in the UK at that point but even I knew that was a bit strange normally you would then maybe have one chaperone take you to your next hospital but the the ambulance was full it was ridiculous also if anybody has ever driven in Italy it is carnage they are scary drivers so being in the back of an ambulance like I said honestly now it's kind of comical but at the time it was not funny at all it was very scary and even more so when we arrived at the what I then found out to be an intensive care unit in this other hospital in the centre of Milan he was then taken and I wasn't allowed to follow him and the staff there were very rude I think maybe we didn't understand quite how poorly Oscar was at that point but we were literally put into a waiting room and left with no clue as to what was going on now I don't know how long we were left in that room but it felt like hours and hours and then the rules at this new hospital were very different we were not allowed to stay with him we could visit him which is just absurd to me how can your child be in intensive care and you can't stay can't stay with them and so at that point we had made an emergency call to my husband and said that something was seriously wrong with Oscar they were moving him to another hospital and that he needed to come out he needed he needed to be here of course he was looking after our daughter so he then had to contact the hospice and get an emergency place for her to stay with them and all of this is just crazy right we've then essentially left our terminally ill daughter in hospice care and flown to another country it's just absurd and so anyway my husband eventually arrived with a family friend and we all just sat in that waiting room waiting and waiting and no one really giving us any answers as to what the hell was going on it turned out that Oscar had pleurisy and pneumonia and was really struggling with his breathing his bloods were not coming back up from the chemotherapy and so he was just really really poorly they were able to stabilize him and again i can't remember the time frames because it is all just such a blur for me but eventually we were transferred back to our original hospital and my husband was able to fly home back to our daughter now at this point the team that were doing the treatment came and had a conversation with me to discuss the treatment for my son Felix was i still comfortable in going ahead with this treatment after nearly losing my son Oscar to the treatment what choice did i have what choice did i have if he did not have this treatment essentially it was a death sentence anyway so i had no choice but to then send my other son through the same treatment that i had just fought for my son's life to get through so i'm hoping this will make sense because even now just reliving it back to you it just sounds so absurd so chaotic so as i said comical it's kind of not believable that this all happened and so yeah i had to make that decision that i was now going to put my other son through this treatment they did agree to make some changes of course this was a trial treatment so that's what happens they take into account everything that happens and then they change things slightly so i believe he was given a slightly lower dose of chemotherapy and it was spread out over a longer period of time i think he received a dose in the morning and the evening as opposed to one high dose just once a day and fortunately that seemed to do the trick because i say felix sailed through the treatment he did but it was still also just as intense for him i think sometimes we gloss over his treatment because oscars was so traumatic and felix did essentially just sail through the treatment as we expected both the boys to do especially oscar because he was the bigger stronger twin which is why he went first thank god he went first because had felix had initially been through that initial treatment that oscar had he probably wouldn't have made it and so at this point we had oscar in one room recovering from everything that he'd been through and we had felix in the room next door then starting his treatment just after felix had received his treatment our daughter then took a turn for the worse so at this point she was then rushed to hospital back in the uk and i was told that maybe i would i should come back and see her because they didn't know which way this was going to go how could i get back to the uk when i had two babies in isolating hospital rooms receiving a life-saving treatment obviously that was no easy feat i had to i can't remember exactly what had to be done but i had to essentially sign over my parental rights to my children to nonna who had been there with me throughout the whole of this treatment for the boys out in italy to say that should anything happen whilst i was gone she was able to make parental choices that i would otherwise have made of course she would call me and contact me and let me know what was happening but essentially in the moment there in italy she was the one that had to make decisions for them that's not an easy thing to sign over to somebody else no matter how much you trust them but again what choice did i have i had to get home and see my daughter another comical story is that i had never actually flown on my own before at this point and now i was having to fly back from italy back to the uk on my own to my daughter who i didn't know what state she would be in once i landed i was terrified fortunately our earth angels as we call them our italian family they took me to the airport and they stayed with me for as long as they could until i obviously went through passport control and at that point i'd got to my gate i was waiting for my flight and then i started to notice that everybody was getting up and looking at the screen and i was just like oh no this doesn't look good and my flight had been delayed by six hours six hours and i was trying to get home to my daughter because she was in hospital essentially not going to pull through and my flight had just been delayed by six hours to say that i was a mess at that point would be an understatement i was hysterical in the she spoke no english and i was trying to explain to her why i was so upset obviously she couldn't understand me and it was just horrific i had no one to speak to i was just abandoned it felt in this italian airport in the middle of nowhere desperately trying to get home to my daughter eventually i managed to calm myself down obviously spoke to my husband on the phone who reassured me that my daughter was she was okay obviously not great but i didn't need to panic nothing drastic was happening so i managed to go and get myself some food and then however many hours later returned back to the gate to wait for our flight and i remember at that point i was trying to sleep on some chairs and this lad and his what turned out to be his nan sat down next to me and obviously started talking to each other and they were english oh it was such a breath of fresh air to hear people talking english at this point i can't even remember how long i'd been in italy for but i just i sat up and i just started talking to them and they probably just thought i was some crazy deranged lady but i was just so relieved to have english people to talk to hello hello hello so i just want to share that i've actually just had to pause the podcast recording at that point because the hospital rang me to book in blood test appointments for the boys and that is just the reality of being a medical mum like it's just constant every part of your daily life is then impacted because of something to do with your child and their diagnosis and their treatment and whatever it may be so as i was saying yes i was speaking to this english these english people in the airport and um just word formatting to them i think about anything and everything that had happened and i was absolutely gutted when they had to go and get on their flight even though mine was about 30 minutes later so anyway i finally got on my flight i finally got home it was early hours of the morning so i went home got a few hours sleep and then as soon as i woke up i was straight to the hospital to go and see my daughter by which point she had taken a turn for the better and was doing relatively well and as i walked in the room just gave me a massive cheeky smile it was almost like i just wanted to see your mum basically so i thought i'll just scare everybody and that way they'll get you here to see me and once we knew that she was okay it was a welcome break for me to be away from italy to be back in the uk surrounded by english people who i could understand what they were saying to spend some quality time with my husband and our daughter before i then had to leave them both again to obviously get back to my boys in italy and yeah things didn't get much easier once i returned to italy oscar took a long time to pull through really um by which point he did actually end up being transferred back to the intensive care hospital in the center of milan and so at that point i had the boys in two different hospitals in italy and navigating that was difficult as i said felix essentially sailed through treatment but it was still just as rough for him because it was an intense tough treatment that's not easy for any baby to go through and i actually feel like i abandoned him to some degree because he was doing okay he was left to nonna and other family and friends that came out to support us to be with him so that i could stay with oscar in the intensive care hospital by this point we had built up a bit of a rapport with that team in that hospital they kind of understood who we were why we were there the treatment that oscar was receiving at this other hospital and they could see that we had started to lose trust in the original hospital that had given the boys the treatment and that was really difficult for us because essentially they had saved what we believed that they had hopefully saved the boys lives and yet we were losing our trust with them because each time oscar went back to them he would deteriorate and so it was agreed with the intensive care hospital that oscar could stay there until we could get him back home to the uk that then became another mission in that we just got to a point where we were like the boys have both had their treatment we are so so grateful thank you very much but now we just need to get them home we need to get back to the uk i need to be in the same country as my daughter we just need to all be together again and so this then meant calls to the english embassy and to try and work out how exactly we were going to get the boys home neither of them were in any fit state to be on a commercial flight and so we even started looking at paying ourselves for a private flight to get the boys home fortunately i don't know who or how this came about but the cats team who are based at great ormond street who fly all across the world to bring children to great ormond street that need the support and care and expertise that they are able to provide the cats team will go and collect that child and bring them to great ormond street and they are the ones that came out to italy and got us and it was just the relief was huge just knowing that they were coming was incredible but on the day that they came i was just sitting there with oscar because they were coming to get us first and i heard them come up in the lift i heard the english voices and i instantly as soon as i heard the english accent and the voices and i knew they were there i just felt like a huge weight was off my shoulders i knew that we would be looked after at that point not that we hadn't been but i think just that language barrier and everything just added to the pressure and the intensity of everything that was happening because it was so intense and it was so traumatic yet it was so difficult to understand what was going on and what was happening because there was that language barrier and so when they came around the corner i was just like so relieved that we were now in their capable hands and that i could relax we were going home and so yeah we got on the ambulance and it was a private plane and i can't i believe a taxi yeah it was a taxi that brought felix to the airport i was the only adult allowed to fly with the boys so i honestly can't remember how felix even got i know he was brought by taxi but there must have been somebody with him he obviously wasn't in a taxi on his own oh i remember he was brought to the intensive care hospital by taxi by nonna i believe with nonna she then had to go back to our accommodation and sort out all our stuff along with some other family and friends that were helping and obviously they then had to get a commercial flight back to the uk and then i had felix and oscar with me with the cats team on our private plane and we flew straight back into london and then were picked up by an ambulance and taken straight to great ormond street there was some confusion because great ormond street were expecting oscar as a patient but they weren't expecting felix and obviously felix was still at risk his immune system was still very low he had not long received treatment and so at that point great ormond street then incredibly found us accommodation right on the doorstep and even though it was meant for two families i believe this accommodation they just kept it clear for us to have felix in there so that he wasn't exposed to other people and was able to recover in this accommodation and they were incredible very quickly they assessed oscar and were able to get him back up to a standard where we were able to discharge him and eventually come back home to norfolk and that felt like an incredibly long journey it felt like we were away for years essentially i think we arrived in italy on the 6th of february and i believe we were back home like in our own house by the 6th of june just in time for the boys first birthday so yeah it was a journey and then even from that point the boys still had a long road of recovery ahead of them but i was just so grateful to have them all back under one roof we were told that oscar would potentially be oxygen dependent for the rest of his life and that he also had some rare kidney condition which would essentially mean that at some point in the future he would require a kidney transplant none of which of those things were true he doesn't have any of those issues now and so as much as we are so incredibly grateful that the boys were able to receive this treatment during its trial phases even though the trial had technically finished the team still took the boys on and we are so grateful for that we are also so incredibly grateful for our earth angels as we call them the people who we met out in italy who supported us and cared for us and cooked for us and stepped in and sat with felix when we were rushing to an intensive care hospital for oscar and there was no one else out there to sit with felix and we left him with our italian family our new italian family that we had met whilst out there and yeah as i said the boys still had a long journey of recovery ahead of them but they were here and they're still here today and they're doing incredibly well and i have been a huge part of helping to get the treatment here in the uk now so now any children who are diagnosed in time have access to that treatment here in the uk they do not have to travel to milan italy anymore to receive that treatment however something that we are still fighting for is to get mld added to the heel prick test so as i'm sure you'll be aware when you had your babies they would have had a heel prick test to take spots of blood to test them for certain conditions i believe there's currently nine on the list here in the uk that with the babies are tested for i think in italy they test for up to 40 different conditions so as the uk we are massively lacking behind now that we have the treatment here in the uk the treatment for mld can only be administered before symptoms start so essentially what that means at the moment is that an older sibling will present with symptoms they will then be diagnosed with this rare genetic life-limiting condition to which younger siblings can then be tested because they know the older sibling has it and if they are then diagnosed as having the condition they can then go on to have treatment this is why we have to get this condition added to the heel prick test so that we're not sacrificing older siblings to save the younger ones all of these children can be saved why are we allowing them to suffer and die is just beyond me so that's a fight that we are still fighting in the world of mld at the moment we've got the treatment here in the uk that was a fight in itself it is like the most expensive treatment that the nhs fund but they're not heel prick testing babies so they're missing so many children that could be treated for this condition anyways this has been a long episode i hope you're still with me um as i'm sure you can appreciate it's been a journey after sharing my daughter's story in my last episode and obviously the boy's treatment journey in this episode that's a lot compacted into two episodes so yeah i hope it all made sense i hope you've enjoyed it if you have any if you can resonate with any of that or you just want to like leave me a comment or give me some feedback to to my story then that would be very much appreciated you can now do that using um speak pipe so you can actually leave me a voice note letting me know your thoughts and feelings on what you've just listened to so i'd love to hear your feedback or answer any questions that you have if you are feeling isolated and alone and you've been through something similar like this your child has a rare genetic condition and maybe you don't have anyone around you to speak to or maybe they just have complex care needs and you just would love to be a part of a community that actually understands and can appreciate what you go through as a medical mum on a daily basis then you are so welcome to join bravely connected which is the community that i have created for mums just like us or if you're not already you can follow me over on instagram at bravely together thank you so much for being here and i will speak to you soon on the next episode