I am Lynsey and I live in Leeds with my husband Chris and our cat Pushkin plus some tropical fish. My life has not panned out as expected, beginning when my daughter Ellie Mae started showing signs of a neurological disorder soon after she turned 3 years old. Eventually both she and my son Caleb were diagnosed with Late Infantile Batten Disease, a complex neuro degenerative condition with no cure. Our family had the privilege to care for them for their too short lives and we sadly said goodbye to Ellie Mae in 2015 aged 6 years old and to Caleb in 2019 aged 9 years old.
I am a Peer Befriender for the Batten Disease Family Association, to support other families living with battens. I have found comfort in other bereaved parents who understand living without your children and in my Christian faith in a loving God who redeems all losses and griefs.
Lynsey lost both of her beautiful children to Batten’s Disease, a rare and complex disease that is always fatal. In this episode, she speaks with grace and compassion about her family’s journey through these terrible losses, and how she is now able to help others facing similar challenges, as a peer befriender.
To find out about the Batten’s Disease Family Association, click here.
Batten’s Disease Family Association
Contact, an organisation for families with disabled children, offers support and advice to families where a child has a rare condition.
Follow us on:
Debbie Enever, Host
Lynsey Dent, Guest
[00:00:00] Hello, this is the Bereaved Parents Club podcast. It’s the club none of us want to be members of, but here we are. My name is Debbie and I’m a bereaved parent. This podcast is for all of us, to share and celebrate the stories of our children and offer support to each other. Each episode will explore topics that have relevance to us as we navigate the world as bereaved parents.
Whether your loss was last week, last month, last year, or even last century, you are welcome here. And whether your child was a baby, a youngster, a teenager, an adult, or even a parent themselves, you are welcome here. Please be aware that each episode will deal with themes of death and loss. [00:01:00]
Giving back: Batten’s disease and befriending.
In today’s episode, I’m joined by Lynsey Dent, Caleb and Ellie Mae’s mum. We’ll be talking about a rare disease and how it took both of Lynsey’s little children. And we’ll also look at building a life after loss, becoming a peer befriender, and there’s also a surprise hit single.
But before we go any further, Lynsey, would you mind just introducing yourself and telling us your own story, please?
Yes. So, my name is Lynsey. I’m from Leeds. I’m a massage therapist, but my story is my two children, Ellie Mae and Caleb. Ellie Mae was born in 2008 and Caleb was born in 2010. They were born perfectly healthily and everything was fine, went pretty much as expected and normally when they were [00:02:00] babies, and it wasn’t until Ellie Mae was around three years old that we started having problems with her. She started having seizures and her learning rate slowed down, so they diagnosed her with epilepsy and with global developmental delay. And we then went into a period of 18 months of her symptoms worsening and new symptoms starting and lots of tests, lots of hospital appointments.
And just before her fifth birthday, she was diagnosed with Batten disease, which is a neurodegenerative condition, which is life limiting, with no cure. And it’s always fatal. And very sadly, we knew by this point that Caleb, who was just 17 months younger, was very likely to have the same condition as Ellie Mae, whatever that was.
We didn’t know, so we were just Ellie Mae was the one who was having all the tests. But Caleb had also [00:03:00] followed a similar path and he had started with seizures just after his third birthday as well. He was also developmentally delayed and by this point Ellie Mae had stopped being able to walk. Her speech had slowed right down so she could still say a few words but not very many.
She was struggling to eat enough so she was losing weight. So, by the time we received the diagnosis, we, we knew that it wasn’t anything good. We knew she was seriously poorly, but it was still a tremendous shock to find out just how poorly she was, and they said there was nothing that we could do for her.
We, we just had to basically take her home and give her as good life as possible. for as long as we had left with her. They tell you not to Google it, but the first thing is you go home and you Google it. And horrible words come out at you, words like dementia, blind, bedridden. So it was, it was just such a horrific time.
We’d spent so long looking [00:04:00] for answers, obviously with a hope that it would be something that could be treated and cured. But sadly, it wasn’t to be for either Ellie Mae or Caleb. And then we set about really giving them as good a life as we could. It completely changed our priorities, I guess, our outlook on life.
Because instead of raising children to grow up and be adults, we knew that that wasn’t going to happen with Ellie Mae and Caleb. They were unlikely to see their teens, was what we were told. So really it was just about making every day count. Whether that was doing something special or whether it was just what they love to do at home, that was what we tried to do for them.
And Ellie Mae then deteriorated quite rapidly once she turned six, and she passed away when she was nearly six and a half, which was on very much the lower end of what we were told. We were given a life expectancy of six to 12, but she was just six. And Caleb, we had for a bit longer, he was nine.
Just an absolutely devastating diagnosis. [00:05:00] And even though we knew we were going to lose them, we couldn’t imagine it. We were in the hospice with, with both of them. We’d received really good support from our local hospice. We were told what was happening. We knew both of them were end of life, so we had most things in place. There’s still absolutely nothing that can prepare you for that moment when they leave you, and I don’t have any words for it.
Thank you so much for sharing that story, because there comes a time where we don’t share stories. And we don’t tell people what happened again because there’s an expectation that either everybody knows, or it’s been too long and they don’t want to ask. So part of this podcast really is to retell that story and just remind people what happened and to say their names. So thank you.
I suppose now people will also be reaching for Google to find out more about Batten’s. So, rather than that, can you explain it for listeners? I know you’ve touched on it a little already, but it would be really helpful if [00:06:00] you could give us a bit more detail. And perhaps also tell us what support you had at the time to understand Batten’s.
Yes, so Batten Disease is, like I said, it’s a neurodegenerative condition. And the very basic way of understanding it is that all of us have waste that builds up in our brain cells, and that waste is regularly cleared away.
But in Batten disease, that clearing away doesn’t happen, and so the waste builds up in the cells, and then they die, and when the brain cells start to die, that’s when you see the various symptoms. It’s an umbrella term, really, is Batten disease, in that there are 13 different types. And some are more common than others, but they’re all rare in the population, it’s a rare disease.
In terms of how the disease develops, it develops slightly differently in the different types, but there is a progressive nature in, in all of the types. So, Elie Mae and Caleb had what is called Late Infantile Batten Disease. And it starts with [00:07:00] seizures, that’s usually the most common first symptom. And it then leads to losing the ability to walk, losing the ability to talk.
One of the last things to be lost is the eyesight. Eventually, the organs shut down. There are types where symptoms will start later on, like in teenage years. So there are adults who have Batten’s Disease. Well, there’s quite a broad spectrum. Our neurologist referred us straight away to the Batten Disease Family Association, which is the only charity for batten disease in the UK, the BDFA for short.
And they exist to provide support for all families who are going through it from diagnosis, you know, into bereavement. It was set up in 1998, I believe, by families. So, it’s always had families at like the heart. It supports around 125 families at the minute. And the support is very practical because that’s what [00:08:00] you, you need.
So it’s advocacy for things like education, health, social care, all the things that we often have to fight to get. And. One of the main things that I’ve benefited from the BDFA is simply by it connecting you with other families who are going through the same thing or a similar thing. And that’s really important when it’s something that is so rare.
Normally when you say Batten’s Disease to somebody, they’ve never heard of it. And the number of times that would be in an ambulance and the paramedics would be googling it, so just to be able to sit down with somebody or call somebody and for them to know and understand is really important.
And bizarrely, but through the pandemic, things moved online and, and through Zoom, and that’s actually, I think for, for our community actually brought greater connection. We’ve got these ways of, of communicating in a way that we didn’t before as we’re spread all, all, all over the UK, right, you know, right to the top of Scotland, right down in, in Devon.
And the BDFA does a number of different support groups, the mums, the [00:09:00] dads, the siblings. We also have some information sessions which are led by parents, so for example, there’s one on tube feeding, because that’s something which a lot of children and young adults with Batten’s Disease have.
I know that you’re doing some work with them now as a peer befriender?
In terms of the peer befriending, this is a fairly recent scheme that’s been going, I think, just for one or two years now, and the idea of that is that it’s peer support, so you have somebody to walk with you a little bit who has been where you have been and I’ve been doing that for about 12 or 18 months and it’s a real privilege to walk with somebody and it’s something that I wish I would have had when I, when my children were first diagnosed because it can feel very, very lonely.
And a lot of families will say, a lot of parents will say that they are very isolated just through the nature of their child’s condition. [00:10:00] Just through not being able to access the normal social sports clubs and things that families can access, you can end up spending a lot of time at home on your own. So anything that kind of breaks that isolation and where you can have a conversation with somebody who really truly understands it is invaluable really.
So that’s the idea of the peer befriending project and it’s been set up to be done in a structured way. So, the peer befrienders have all been through training and as peer befrienders, we have supervision on a monthly basis as well for our own wellbeing as, as we seek to support other people and to make sure that everything’s done properly.
Yeah. I am sure that your support is really, really valued because as you say, it’s the sort of thing you wish you’d had. I feel like we’ve skipped through a lot there and I’m aware that we’ve somehow managed to, and it’s my fault, overlook who Ellie Mae and Caleb really were in all of this. So, I think it’d be lovely if you’d just take this opportunity [00:11:00] to share with us a little bit about what they were both like.
They, they were quite different, the two of them. They were very close and they loved each other very much, but they were quite different personalities. Ellie Mae, I would always describe as my little ray of joy. She was a light. She loved life. She, all of her emotions were right to the surface. They’d come out, you know, she’d laugh, she’d cry, she’d run around. She was just so full of life.
Caleb was slightly more, more complex, a little bit harder to know exactly what was going on with him. But the things that he loved, he would become almost obsessive about, and therefore so many things remind me of Caleb, whether it’s Thomas The Tank Engine, he loved Disney films, animals, trains, trains were massive, um, and so the times when really my Caleb memories come up is when doing something that he would have absolutely loved.
They were both very passionate. I was with a friend and her daughter the other [00:12:00] day, and the Katy Perry Fireworks song came on, which was in Madagascar 3. And it reminded me instantly of Caleb because of how much he loved that song and he loved that film.
Oh, that’s lovely. Thank you, Lynsey. A couple of things that I kind of want to touch on really, one is, I know that there was a beautiful single that was released in December by Poppy Brownnutt called When You Were With Me, and that was composed in memory of Caleb and Ellie Mae. Can you tell me a bit more about that please?
Yes, so Poppy is Ellie Mae and Caleb’s cousin. She is two, two and a half years older than Ellie Mae and four years older than Caleb, and they were very close when they were all growing up together and saw each other every week. And Poppy had such a special bond with both of them. They, they just absolutely adored and looked up to her as, you know, their big cousin.
And Poppy is a very talented, cute singer, and she wrote this [00:13:00] song for herself because it’s her memories of times that they had spent together. So really precious personal memories. And she told her mum that she’d written this song for Ellie Mae and Caleb. And her mum, Liz, um, actually works for the BDFA and has a contact, David McGovern, who works for Beyond Records, and he’s done charity singles for the BDFA before.
He listened to it and said, this is great. We should record this and we should release it. And it got to, I think, number six in the physical charts when it was first released.
Where can listeners buy a copy and where can they listen?
It can be on any, any normal digital platform. So whether it’s Spotify, iTunes, you can find it on there. And if you search for Poppy. When you were with me, then it will come up and also if you go to the BDFA website, they have a shop and you can buy the physical CD.
Well, I’m sure the title, When You Were With Me, will resonate with many listeners. [00:14:00] So we’ll make sure we signpost people to the right place, both on the episode listing and on our webpage.
The other thing I’m thinking about is that you’ve done a thing that a lot of bereaved parents do, which is to channel energy into helping other people. It’s that recognition that others will probably benefit from our unfortunate expertise. What do you do for yourself now to keep going, to hold your memories? And find happiness and joy in the day?
Oh, that’s a difficult question. I think grief is a real rollercoaster of a journey and, and kind of how I cope with that and look after myself in it has changed over the years. So in terms of the time that it’s been, Ellie Mae passed away in 2015 and Caleb in 2019.
So I feel a little bit like I’m an old hand at it now. It’s not quite as it was in the early days. So there are various things that I do. [00:15:00] Whenever it’s a birthday or an anniversary, so I have four of those dates throughout the year, I make sure that I book those off work, and I give those days to the children, they’re their days.
And I try not to have any expectations on myself as to what I’m gonna do, or for anybody else to have any expectations of me on those days, and I feel like that is their time. And I might visit their resting place, I might go to the local park, do something that brings back their memories. And I found that that has been increasingly important as time has gone on and as life has got busier to carve out that time.
The other thing, which is quite a recent tool, I guess you would say that I have, is I’ve discovered Amazon Photos, where you can upload and your videos, and then it orders them in day order. And then every day it shows you your memories from that day. And I find this quite a accessible way of me being able to look at a memory, look at a video, take me back briefly [00:16:00] to that time when they were here, have a smile, have a cry, but without it being overwhelming in the way that if I get out my laptop and I start looking at pictures, there’s so many that it becomes overwhelming.
And so it’s something that I happened upon really by chance, but it has been such a helpful app to have on my phone for just bite sized memories. And like you said earlier, saying their names and talking about them, because as life goes on, their names are mentioned by others less and less. But obviously to me, they’re my children still, and I think of them all the time.
So just bringing them into conversation and not worrying too much how people are going to react to that. But this is normal for me to talk about my kids, just like it’s normal for everybody to talk about their kids.
We’ve covered quite a lot today, but are there any other messages or words of advice you’d like to pass on to our listeners?
I think not being scared to reach out to other people and have [00:17:00] conversations with other people who are bereaved parents, because the times that I have done that, even though it’s difficult and you feel quite vulnerable, maybe not knowing what story you’re going to get back and how you’re going to react to that story, it’s always led to this deep connection of empathy and of understanding something that none of us wish we understood, but we’re not on our own with it and having the freedom to speak and say things that to people who have never experienced. It might feel like black humour or might feel not appropriate in some way, but being able to honestly air all of those feelings around loss and grief and trying to still live life, as you have to whilst carrying all of this, I think it’s just really important for us, even though it is, it can be difficult making that first step.
Lynsey, because we’re aware that we take listeners on quite an [00:18:00] emotional journey in our podcasts. We always try to end on a gentler note by asking guests to share with us something they’re grateful for, preferably something a bit silly. So, Lynsey, what are you grateful for?
I’m grateful for tea because I can’t imagine life without it, really. Whenever anything stressful or emotional or difficult or tiring or just anything not positive has happened, a cup of tea just always seems to make it better –‘I’ll get through this and then I’ll have my cup of tea’. It’s my little reward. So I’d like to think that that’s silly because it’s just a drink, but I’m also quite serious about it.
No, I think there’s, there’s room for both in that. Definitely. We’re British. We use tea as currency anyway, don’t we? To some degree or other when all else fails, have a cup of tea and, and then see where you are with the world. I think definitely. So yeah, I agree. That’s a really lovely thing to be grateful for.
And that was that. I hope you are as impressed as [00:19:00] I am by Lynsey’s wonderful attitude and approach to life. It was lovely to hear about Ellie Mae and Caleb, and we’ll be putting links on our pages to the BDFA and where to listen and to buy Poppy’s amazing single.
Thank you, as always, for listening. And please do share the podcast amongst your networks so that we can reach everyone who might benefit. Finally, if you want to know more about my grief journey, you can find a link to my book Midowed: A Mother’s Grief on our webpage.
This episode is dedicated to Ellie Mae and Caleb.