08 - Love Beyond Limits - Georgie Ogden on Parenting, Dravet Syndrome, and Finding Light in the Dark

In this deeply moving episode, I’m joined by Georgie Ogden - a qualified naturopath, certified Gut Restore Practitioner, and mother to Archie, who lives with Dravet Syndrome, a rare and severe form of epilepsy. Georgie’s story is one of resilience, heartbreak, healing, and hope.

Together we explore the emotional and practical realities of raising a child with such high needs, and how this experience has shaped Georgie’s family, her identity, and her work. She shares with extraordinary honesty what it has meant to walk through trauma, find presence in chaos, and create joy even in the darkest of times.

Our conversation touches on:

• Archie's diagnosis and life with Dravet Syndrome
• The strain and strength in relationships through crisis
• Navigating grief, trauma, and a new kind of parenthood
• Breathwork, nutrition, and rituals for staying grounded
• The arrival of baby Oscar and the healing he brought
• How Georgie now supports SEND children and families through gut restoration
• The critical role of community, specialist care, and asking for help

Georgie’s personal and professional journey has led her to become a passionate advocate for family health — particularly for children with special educational needs and disabilities. Her work is already making a difference in the lives of many.

🌱 Resources Mentioned:
• Welcome to Holland by Emily Perl Kingsley  — a guide for caregivers of children with complex needs
 • Dravet Syndrome UK – including welcome packs and family support
• Facebook: Dravet Syndrome UK – community support group
• Help for non-verbal children – Autism Speaks resources
• NAPA Centre – intensive therapy centre supporting children with neurological challenges

I would be so grateful if you could buy me a coffee using THIS LINK. This helps me fund the podcast and keep it going 🙏

Transcript

Hello, and welcome to today's episode. I am so glad you're here. Today's conversation is a tender and a powerful one. 

I'm joined by Georgie Ogden, a courageous and deeply thoughtful mother, whose young son Archie has a rare and complex condition called Dravet Bay Syndrome. It's a severe form of epilepsy that begins in infancy and brings with it many unknowns. Georgie shares with us what it's been like to walk this path, how the diagnosis came about, how it affected her daily life, her marriage and her wider family, and what it's like to bring a new baby into the mix while navigating the care of a child with such high needs. 

Her honesty is both moving and illuminating. Whether you're a parent, a caregiver, or simply someone who wants to understand more about what it means to live with uncertainty and love beyond limits, this episode will speak to you. So let's take a together and step into this conversation with Georgie. 

Well, Georgie, wow, can you start by telling us what the syndrome is, Dravet Syndrome is, and how you first came to hear of it in relation to your son? Thanks, Kay. So, so we found out we were living in Singapore at the time. So we were expat living and we were joining our friends and we were all having children and we had Archie. 

It was a typical birth. He was, looking back at videos, he was a bit different as a baby. He couldn't really sleep or lie down very much, but nothing was out of the ordinary until three months old when he had his first seizure, which as you can imagine, we did not see coming.

And what was the effect of that seizure? It was, sorry, it was on Father's Day. So I was having a sleep in and Charlie came running in with Archie and he was still and just staring at the ceiling and his body was very rigid. So luckily I'd been around healthcare growing up, so I took one look at him and figured it was a type of seizure, but I never occurred to me, babies have seizures. 

It's just not something that you think of. So yeah, no, we took action and called the ambulance and in Singapore, it takes a while. So yeah, we went, that's kind of all started. 

He was resuscitated after that because his lungs wouldn't work, prostectors, so they had to do rescue breaths. So it was all very intense for his very first seizure to wake up to what I'll explain as Dravet syndrome. And from there, we then started having multiple. 

So epilepsy is not diagnosed until you've had a couple. And we did a lot of the tests after that, the MRI, the EEGs, and all of them came back clear. We were completely bamboozled, our little babies having seizures every other day and, or maybe like three times a week, and they would be prolonged, they wouldn't break. 

And we have to call an ambulance each time. So we ended up staying in hospital and everything was coming back clear. And luckily we had private medical insurance. 

So we sent off for genetic testing to see if there's anything there that we've missed. And that's where we found it. So they test the mother's line, the father's line, and the baby. 

And it's not in my line and it's not in Charlie's. It was called de novo, which is a nature's change in a mutation of that genetic part, that DNA strand, just like green to blue eyes. He has the change in what's called a sodium channel, SCM1A. 

And his little channel had just mutated a couple of notches. And that just means that his brain doesn't calm and break like yours and ours do. So it's just a simple change that has made a world of difference to a little boy.

And that must have been really terrifying for you. I mean, losing a child, I think, is one of the worst things you could ever happen in your life. Of course.

So Dravet syndrome, Archie's still with us, has a very high mortality rate. But the clincher with Dravet is that every time that they have a prolonged seizure, and they are resuscitated, each time you think that they're dying, or they're dead. So it's not just happening once, it's happening twice a week.

The hard and fast trauma you go through in the first year. Now, we just say that Dravet is a spectrum. So some Dravet kids have maybe two seizures in their first year. 

And then you have like anything, the severe end of the spectrum where they have multiple and prolonged. Now, for some reason or another, Archie ended up being more in the severe category of Dravet syndrome, which is the severest form of epilepsy. So Archie really did have, his would last up to an hour, until we got into hospital and they would give him medication. 

So his was, as we now know, very intense. So as parents, Charlie and I went through a lot of trauma in that first year. Barely remember a lot of it. 

We've been intubated, he's been induced comas when he was seven months old. He wasn't even crawling and he was in a coma, blood transfusions. I mean, multiple resuscitations, he flatlined once. 

It's been that first year was a roller coaster. Yeah, I mean, it's got a little bit easier with age, but that first year for Dravet, the diagnosis and, and just handling the seizures, never mind coming to terms with the fact that your child has now gone from what you thought was going to be a beautiful neurotypical, easy child to a send child, which is enough to get your head around with grief anyway. So we couldn't really grieve the fact that we have a child with needs because we were too busy keeping him alive.

Have you ever had a chance to grieve? We have now, yeah. It was probably about year two and three. We did have a therapist that we saw every couple of weeks at the Oakdale Centre in Harrogate. 

Without her, gosh, she's helped us be better parents, helping us grieve. There's a wonderful poem called Welcome to Holland. If you haven't read it, I highly recommend if you know anyone with send children or coming into a life who has a special needs child, I recommend reading the poem Welcome to Holland. 

It was really, really powerful for us at the time to explain what it felt like. So what do you reckon has been the biggest challenge for you personally in navigating Archie's journey so far? Gosh, trying to lead a normal life. So when you say normal with quotations, but it's taking him to the park still, me trying to get into work, looking after myself, enjoying life, finding that fun in life when Archie's going through what he does, which obviously we go through what we do. 

And it's that balance of finding joy in life and looking after him and creating life fun for him. With that balance of keeping him safe. That's been the hardest. 

So I'll give you a quick example is going to the park. So there's a park in in Valley Gardens, a kid's park, and Archie's photosensitive. So railings would trigger seizures. 

If you go to any park, you'll see that it's surrounded by railings. So I would make sure he could enjoy it as a child. But the courage it would take to get him there, and then make sure he didn't look at railings. 

So he could go on slides, play with children. That was very, very intense, what would be a 15, 20 minutes, but I would do it so that he could experience a bit of normality as a child. So that navigating between that experience and quality of life for myself and for Archie is probably been the hardest part of the journey.

And how did your relationship with Charlie change or evolve in the face of this new reality you found yourself in? Well, everybody handles grief differently. And I think 87% of special needs parents divorce within the first few years. So it's a very high percentage. 

And we had our troubles. But it was a journey that we realized we had to walk together but separately to process. And we did that. 

And we've walked our journey separately with our therapist independently and the therapist together. And we noticed that when we worked with Archie and his happiness, and we found time for each other, and the gym and things for individual, that's what made the difference. So it was being very focused on where we spent our time and where we put our focus. 

And luckily, yeah, we've managed to still be in love and have another baby. I mean, that's a miracle in itself. But also, you've had to move, change countries. 

And for Charlie, you know, coming over from Australia, Singapore is one thing, but to come to a North Yorkshire winter, that must have been quite I don't think you'll find a day where you won't complain about the Yorkshire weather. But he loves the people and loves the pub culture. I think he'll speak probably better for himself. 

But he's got friends here, which have moved over from Hong Kong and Singapore, which is, since we've left Yorkshire, and we've moved down south for Archie to be close to better rehab centers and schooling. We've now got a lot, he's got a lot of better social life. He was at Oasis last night. 

He's carving a life for himself here with friends when his family's not here, which is really important to keep that fun side. So it's not just serious and family focus all the time. Well, I mean, that's the other thing. 

You've moved to be near facilities that enable Archie to fulfill his own potential. And that's another impact, both financial and, you know, and physical. You've got a choice. 

I remember someone saying that even if your child passes away at one years old or two, if all they ever knew was you, make it worth it. Don't look back and go, I could have done it better. And that's how we live our life. 

And we don't have multitudes of savings, we spend it on making sure that Archie has the best chance and the best quality of life, because that makes us happy. And in doing so, we make sure that we work out what's important to us, and we fulfill that too. That's how we put our focus. 

We don't drink and party like we used to, because we now focus more on health and that quality time. Because with kids like Archie, you never know how long you've got. Yeah, that must really, yeah, impact your perspective.

And I wish more people would think that way. Like it can change their heartbeats, just enjoy that every day. It's so tragic in so many ways that it takes huge challenges for us to appreciate what we have and what to make the best of instead of, you know, looking at either what other people have or don't have, or what's the John Lennon quote, life is what happens when you're planning the next thing. 

And it's, it's very true. So you're living in the moment. That moment now includes the arrival of baby Oscar, safely landed in February. 

Was it February? Yeah, 20th of February. So how has the dynamic in your family shifted? Oh, God, in so many ways. First of all, we didn't dare have a second. 

We said, absolutely not. We're not having a second. I'm not doing this twice. 

And it was a friend of ours who has a Drivet son who's slightly older. And she had her daughter, Daisy. They're a beautiful family. 

And she said it was an absolute game changer, George, you'd not only get better quality of life, they have a play friend for life, you actually heal along the way. And they were the real drivers for us to have Oscar. And so yeah, when we had Oscar, I completely agree. 

I mean, wow, we experience what normal parenting is like, which is just healing in itself. That's what we wanted to experience the first time. The joy that he brings. 

So Oscar arrived on the 20th of Feb. And that entire next two months, Archie was in the worst he'd been and that's saying a lot when you've heard our first year, he was in Addenbrooke's hospital for better part of two months, because he deteriorated really, really hard and fast. And Oscar was just born. 

I actually went into early labour in the ambulance. But he's obviously pulled through now, but Oscar being born then, he provided joy. And that's what he's done ever since. 

It's a complete contrast to something that's just soul breaking and really hard and really, yeah, really kind of heavy. He when you walk out of that hospital room and into what we were staying in a hotel room at the time in Cambridge, and he was just full of life and giggles and laughter. It was just that that comparison of, of life really brought us up. 

So he's therapy in itself. And he made us then have be regenerated to go back to Archie. And, and he does that every day for us. 

And Archie doesn't really get that he has a sibling, bless him. But hopefully over time, he'll start to play. He's obviously tiny, but very, very healing and provides a lot of joy for us.

Yeah. How have your extended family and friends responded and supported you? First of all, my dad has been, I mean, unbelievable. We arrived here from Singapore and, and Charlie, my husband had to go back to Singapore and live there for just over a year due to work and visas. 

And my dad was Archie's, well, granddad, but his father figure. And he held me up when times were really hard, coming back here without much structure. So dad's done a lot of the heavy lifting. 

He helped me get back into work as well. But our friends and family, they've never known how to help. And it's probably a phrase, if someone said to you what we're going through, you say, let me know how and when you need me and how I can help. 

And the problem is, there is nothing they can do. And there's nothing you can ask for. And most of the time, we wouldn't call you anyway, because we don't know how to process it in our own heads. 

And if we did share the resuscitation stories, it's met with a lot of sadness. And that's the last thing we need is more. So what we found over time is we just asked our friends and family to give us time. 

So time we'd go away to an Airbnb. And they'd accept that sometimes Archie would have seizures at that Airbnb, or we go away to France, or we would spend time making memories with other kids with our friends, and going for lunches. That helped us just get out of the day to day heaviness. 

And that's what we realized was spending time with our friends, just out of the norm. And that's, that's all they could do. And that was just enough.

I think it's generally people feel impotent. And they want to help and, but they, as you said, they don't really know how. So we don't always appreciate how valuable time can be.

That's it. Just a walk. And even if you haven't arranged it, be spontaneous and say, how about we just put him in a wheelchair and let's go for a walk together. 

I'll take the oxygen. Alright, so are there people, communities or organizations that have helped carry you through? Yes, so Dravet Syndrome UK, they're a small charity, we've got five people in. As Dravet have won in, I think 16,000 now.

They have been brilliant. So they gave us our kind of welcome pack, our first oxygen monitor, SATS monitor to have on overnight. We actually changed to the Owlet, because that was better. 

But they were, they helped us understand what meds were, where to look, what we were getting ourselves into. I mean, they were, they were very, very helpful. And at the time, it was very confronting to have these pamphlets, and these pictures and images of older children that have Dravet when you've got a baby. 

So as helpful as they were in the information, what was kind of missing is that, that support emotionally. Because when you're holding a baby, and you see the older children who are struggling and nonverbal, that's a really big pill to swallow. And so as helpful as they were, their biggest help to us has really been funding research to help medication and for therapies for Dravet. 

So genetic therapies, helping new medications, helping calm the brain, the areas like that, and CBD, they've, that's been the most helpful for us. But yeah, overall, I know they've supported a lot of families. Chasing earlier, you did mention that some of the medications used long term, they have to come to an end because Archie builds up a resistance to the benefits from them.

Yeah, Dravet is drug resistant epilepsy. Right, drug resistant epilepsy. Wow.

That brave in itself. It, indeed. Absolutely. 

And for any kind of caregiver, the words alone, just make you tremble. Essentially, as we've now, older parents knew it, and they said it to us at the time, but you just choose to put your head into the sand and go no, one of them will work. One of them will. 

Yeah, none of them work. You get a brief honeymoon period because especially the benzodiazepines, they're a type of medication that suppress the brain so much, which obviously stops them from developing, but it basically calms the brain right down and you get a brief honeymoon period. But the brain is clever. 

It will then work its way around. And if you think about Dravet is, you've got two cells that open a gate and pass a message. And that's how it works. 

Billions happen at the same time. Now, Archie's little gate is called his sodium channel gate. His doesn't shut. 

So what happens is when lots of messages get passed, so patterns, light, movement, heat, his gates open and all the messages pass. And it's like it gets a bit like a fuse box would blow, goes, it's like an electrical storm is what it is. And it'll go completely into a storm. 

That's a seizure. The only way to stop the storm, because his gates don't work, is to load them with sedating medication and make it a bit like a general anesthetic. Just shut it down, calm it down, stop all of those electrical impulses. 

And that's how they handle Dravet, because there is no medication that can stop. It's not a brain damage. It's a cell mutation. 

So cell gate, that's on every cell of his body. So there's no way to treat it because it's every cell. There's not a target area. 

So the only way to stop seizures is to load them with sedation, which obviously stops them from developing. That's why Archie's really, we struggle, but we challenge him to walk and we help him balance and talk and use his hands and things. So yeah, so medication, epileptic medication will work for honeymoon and has worked for some in a little bit, but not really. 

Majority will try one, it'll wear off, try another, it'll work for a little bit, wear off. And we've gone through 13 now. And all the rescue sedating medication as well now, no longer work because we've used them so much, it's breaking. 

He goes, no, I know this, I'm going to keep doing, thank you. And the only option is to increase the dose, but you can't because he's only 20 kilos and his liver and kidneys can't handle any higher. So we're now on the very old drug, which is called phenobarbitone, which destroys the liver, which isn't great, but it does suppress his brain, or obviously intubation in general anaesthetic, which again, is not great for you. 

So you don't want to do that once a week. So I am trying everything as I possibly can naturally, and I have learned a lot, hard and easy ways to help him and reduce his seizures naturally. And that's been a journey in itself, which is, I think one of the reasons why I think this was gifted to me because I've managed to help a lot of others along the way from what we've learned.

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So thank you truly, from my heart. It will be a great help that you're qualified in Chinese medicine as well. So you obviously have a very deep knowledge of alternative ways of coping. 

But on a daily basis, I mean, you're returning to work quite soon. You've got an Archie, got an Oscar. And are there any rituals or practices that you do that help you to feel grounded and resilient? Yeah. 

I mean, in the morning, my breath work is the most important thing. If I am not grounded and present in that day, my head is very, very loud. And the only way I, in my opinion, to win in a circumstance like this is your mind, is how you view it. 

You can either choose to be powerful and tackle it by the horns and push forward and enjoy the present, even if the present is really rubbish that day, just be with the fact that it's rubbish that day. Or you can be a victim. And I am not on this planet for however long to be a victim. 

So that grounding in that morning, and connecting to nature, the world, just taking those breaths. Sometimes it's only five minutes. Sometimes it can be longer. 

But doing that first, sometimes it's after I've picked up Oscar and gone downstairs. I feed him, I put him down. And Archie comes down, he reads a book, sometimes we put on TV. 

When they're safe, then I do my breath work. And sometimes it is only five minutes. I do my spinning. 

I love my exercise and my walking. That's without exercise, my head is very loud, and I struggle to sleep and anxiety comes in. I cut out coffee and things like that, because that wasn't helping. 

And alcohol, I rarely do that a lot now. And I just make sure I'm taken care of so that I can be the best who I want to be and for them. So those practices for me, a healthy diet. 

Yeah, just keeping myself grounded, because without that, my God, it's loud. I can't believe that. I mean, they're good practices for everybody. 

But for somebody sort of living on the edge of a cliff in so many ways, I can see how necessary and important they are. Georgie, what do you wish you'd known at the beginning of this journey? Oh, that's a great question, Kay. I cannot fix it. 

That is probably the biggest one, is acceptance. And I know that that takes time. But just being with it, instead of running from it. 

I'm constantly filling my diary with all the things to do, house. Oh, I'll study this. Oh, I'll do that. 

Oh, I'll start doing a marathon while Archie's in and out of hospital to run away from the trauma and the difficulty of where Archie was. As if I could have just gone, the more you accept this feeling and how hard it is and connect with Archie, and breathe into it, the quicker you will accept and the quicker it will pass. And you cannot fix it. 

No medication can fix it. And just being with him, instead of being so focused on like, yeah, running from it. That's probably my biggest one.

So how has this experience changed the way you see life, motherhood or relationships in any kind of unexpected ways? I think I'm a different woman, Kay, from the one that was a hedonistic lifestyle in Singapore and wanted a child to play with and continue that life. Now, I'm far more grounded. But also I can connect with humans better, with people better, with people's challenges better, no matter what they are. 

Because everyone feels it in their own way. And it gives me a whole different level of understanding the phrase being with, being able to be with someone in a totally different grounded present way is one and just how amazing life is. Which saying that when we deal with what we deal with, shows that, I think someone said the hardest time, the lowest lows, make you appreciate just a normal day. 

And how, how extraordinary and how amazing dropping him off at school is. So I'm the happiest I've ever been. I still have hard days. 

Don't get me wrong. And I definitely enjoy a good pizza on those days. But I appreciate the everyday. 

And I'm full of life if you meet me. That's, I wish I could bundle this up and give it to so many people in the UK. So they, they, that and I, I'm connected and present with my kids. 

I'm not running 100 miles an hour anymore. I'm not go on the partying and film a diary with work and social activities. I'm actually present. 

And that's, I'm so happy I've discovered it. I think we could all learn an awful lot from you. I really do believe that. 

And how, I know you're sort of planning to use what you've learned in terms of helping to support other children, not just with Dravet, but with disabilities, because just tell us a little bit about the school that Arch is attending now and that's helping him with, with his Dravet. Well, the school he has, he's been at a local nursery because not, not many schools would take him. But we found one that would. 

Now he starts the proper special needs school as of September. And so the nursery have been great, but the most kind of, it's kind of a school, it's called NAPPA. And it's a neurological kind of rehab centre in Harlow, Napper, London, N-A-P-A. 

And it's essentially a rehab centre. They, I've got to get a bit emotional talking about them. They have been an absolute game changer for us.

So they got him walking. They have all over their walls, nothing is impossible. You say something you want them to do, ride a bike, we'll make them do it.

And it gives you the possibility of life that anything is possible with these children. And they have them in every state in the US and in Australia, and they have one here. And there's all sorts of kids from cerebral palsy, to different autisms, to array of the beautiful children. 

And you see them thriving, but you see the parents glowing, because now you, you're not helpless to this condition and to this life. You have power, you have tools, exercises, techniques. Archie has an AAC, as I call it, an iPad with different words on it, so he can start to talk through his iPad.

They've given us hope and a way forward, which no school, no therapy, no resources, no charity has been able to do. Now they are private, but they have, they've given us that possibility of life. Without that, I'm not quite sure I'd be this cheeky.

Well, I mean, I know sort of looking to the future isn't something that you particularly do, because you are enjoying your family in the present moment. But I would imagine for Charlie, how frustrating for him if he's nonverbal, that must have been not being able to express what his needs are, how he's feeling. So just the ability through a machine to be able to say, I'm thirsty, or I'm hungry, or... Yeah.

What a miracle. I mean, you see the older kids, bless them, who are teenagers, who have never had this. And they're biting, and they're called, they're behavioral.

They're behavioral, because they can't communicate their needs. And how, if you couldn't talk, how frustrated would you be? I'd be biting and probably throwing things at the wall. So giving these children now they can talk through iPads.

And Archie goes, I want Park. Great. I know exactly what you need. 

I want iPad. Yeah, of course you do, Park. He's a lot happier because he can now communicate. 

Now he's still learning it. He's not great. We get a lot of pressing drink button.

But again, we've got hope, and we can work on that with him, which gives us power, and then gives him power. So we're really lucky to live in a day and time now where technology can really help these children. Yeah, good. 

But it all costs money, doesn't it? That's the hard part. Yeah. The NHS, their resources, they're phenomenal. 

We wouldn't have... Archie wouldn't be alive without the NHS. That's just flat. They've been incredible.

And at the same time, their finances, they don't have the capacity to do and support at this level. Never mind obviously iPads and from parents here, but actually the staff knowing how to train them on it. Now they're just starting to put a little bit more money into resourcing and educating staff towards whether it's mainly focused around autism, sensory needs, but also things like speech and language using devices. 

And so education is going in now a little bit. I personally think we're way too far behind when we should have been doing this. There's a huge increase in send children and the UK is going to go through a bit of a really hard time where we've got the backlog of education and tools and facilities to be able to support these kids.

So to go to something like a NAPA, that's where we, instead of buying a house, we used our mortgage money to pay for NAPA. And that was our choice. Now a lot of parents don't want to do that.

We also did a fundraising 5k a day in May for Archie, where everyone ran 5k a day to fundraise a next few intensives for Archie. And one starts in August on the 18th, which I'm very excited about. But we've had to get inventive and move backwards. 

And that is the what's so right now. That's what it is in the UK if you want to do that. Now it will come and improve with time, but for me, the nought to seven years is not something I want to wait for.

We're very much grabbing it and money will come later. So that's just our approach. But also by doing that, all of those friends of yours, your circle of friends and family have an opportunity to actually help in a way that they know will improve the quality of Archie's life and the whole of your family's life as well.

It gives them an opportunity to contribute, have fun, because I saw some of the different things on the, you know, the May challenge that people were doing. And it was a huge variety. I was thinking people going for a run, but my word, a paddle board. 

I can't remember them all. But they made such fun of it all. And to do things like that so joyously is very special.

Yeah, we've got amazing friends around the world. And there was people who I'd never known or ever met. Once you put it out there, what you're asking for, and you do it from authentic place, people you don't know just joined in.

I had no idea who they were, but they were doing it anyway and they were fundraising for Archie. There is such kindness and beautiful parts in this world and sometimes you just have to be bold to ask for it. Yes. 

Yep, I get that. So what advice would you give to another parent who's just received a diagnosis like this? Go on to the Facebook forums, Dravet UK, or it's actually Dravet Foundation on Facebook. There are I think 3,000 odd parents on there.

Talk to people, put it out there. We will speak to you and call you in a heartbeat. The amount of mums that communicated with me, I used to throw on questions day after day.

And the amount of response time I got from them and the information I got was incredible. So definitely join the forums, talk to mother parents who've gone through Dravet. They'll tell you how normal it is, different things that you're feeling, what you're going through.

Be there in your corner. So definitely do not isolate yourself. Join the forum.

If you're not on Facebook, get through the community or through a local charity and find out other people's journeys. That's what will give you hope and understanding about medication, what type of seizures, what it means. And also, there is no fixing it. 

They will have every type of seizure. It doesn't mean anything. Seizures are seizures. 

And yes, you will try the medications because of course you will. And just time and acceptance. Talking to those parents I think is the biggest thing I would suggest.

Well, thank you. I think your resilience and strength have been a powerful force behind the fact that Archie's still here. And the sort of coordinated love you've worked together to provide for both your boys, you and Charlie, through counselling, through whatever support and help you've had along the way.

It tells an absolutely beautiful story. The story will continue, I have no doubt. I have every faith.

Is there anything else that you would like to say about your lives or all your futures? I do have a tendency, I think Charlie would probably be apt for me to say, I am a positive spinner. And that's always been quite my nature. Now, I appreciate not everyone is like me.

And when times are tough, it's okay for it to be tough. You don't need to spin out of it. Stay with the tough times.

But my biggest advice is don't isolate yourself. Because when things are tough, just reach out. Whether it be family, friends, a forum, Facebook. 

Pick up the phone too. I spoke to a random woman in Australia when I was so depressed I couldn't put a chicken in the oven. I spoke to her in Australia and she told me of her journey and it gave me enough energy, enough vibrance to get back up and continue the fight.

So yeah, it's okay not to be okay, but reach out. If you know anyone, that's my biggest thing. Just keep checking on them. 

Even if it's just a text and they don't leave nor you, just stay there. Wow. Beautiful advice.

Thank you. Thank you, Kay. Thanks for letting us share our story.

Oh, bless you. Bless you. And yeah, thank you to all of you who've listened today.

And I hope Georgie's story has touched you as deeply as it did me. In the midst of uncertainty, Georgie reminds us of the quiet strength that grows from love. The importance of community, family and the resilience of the human spirit.

Her willingness to share so openly is a gift. If you or someone you know is navigating life with Dravet syndrome or any long-term health condition, know that you are not alone. There is support out there.

And there are voices like Georgie's that light the way. Until next time, take care of yourself and those you love. Thank you so much for listening.

If you enjoyed this episode, I'd love to hear your thoughts. Your feedback really helps shape future episodes. Don't forget to subscribe and share it with family and friends who might benefit too.

If you've any questions or if you'd like to be a guest on the podcast, I'd be delighted to hear from you. Until next time, take good care and thank you again for being here. I also teach yoga and qigong online as well as in-person classes, which will be available to join online from the 3rd of September as I'm taking August as a bit of a break.

You can find full details about my classes on my website at www.lovek.co.uk or feel free to contact me directly. My email is k.lovek.co.uk. Thank you.