19 - Part 1: SMA Life Through The Ages

Welcome to the Living With SMA Podcast.

In PART 1 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 23 year old Becca Torricelli about what life is like with SMA. 

As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience in this episode.   

Watch this episode on our YouTube channel here.

#LivingWithSMA  #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy

Each of our guests today shares their own personal views and individual stories.

You can contact SMA UK on the following social media platforms ⬇️⬇️

twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk

If you do have any questions for Luis, Becca and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees.  All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK.  The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Transcript

0:01

Hi there, and welcome to the Living With SMA podcast. We're here to have conversations about living with Spinal Muscular Atrophy. Throughout this podcast, we will be covering lots of different topics from preparing for university, getting the most from your personal budget, sex and relationships, and lots, lots more. So we invite different hosts from across the SMA community to come together here. We want to answer your questions, provide you with useful tips and recommendations, and also share personal stories. So please do reach out and connect with us here at the charity SMA UK. Thank you for listening, and we hope you find the podcast useful. Hi everyone, and welcome to the next episode of Living With SMA. I'm your host, Luis Canto E Castro, I have SMA type 2 and today we're gonna be covering SMA from when we were diagnosed right up through to present day. Unfortunately, not everyone was available at the same time, so we've had to record the session in different days and different times. So please bear with us, I'm sure it's still gonna be as impactful as ever and it's not gonna be much of a difference, it's just gonna be more one on one conversations rather than a group of us talking together. I'm joined by some fantastic guests, today, so hold on to your seats because it's gonna be a great episode. So I'm joined today by Becca, who is really interesting person, and I really hope that we can get some insight into her life, SMA and just following the theme of today's episode, which is talking about SMA awareness, what life is like with SMA and how much support is available out there. So Becca, if you don't mind me asking, if you can introduce yourself to the community, so we know who you are and what you're about. Yeah. Hi, everyone. I'm Becca, you might have heard me on a couple of podcasts from a while back. And yeah, I have SMA type 2, and I am 23 and work full time as a Marketing Executive. And so yeah, I've been part of the SMA UK charity since I was around five. And yeah. Awesome. That's fantastic. Thank you for your commitment to the charity. That's really, really great. The first question I have is, when were you diagnosed officially with SMA? So officially, I was diagnosed when I was 18 months. But it was a really quite a long, slow process to get diagnosed and I think my mum noticed, firstly, when I was about three months old, that something wasn't quite right. I think, she noticed that I wasn't feeding properly. And I kind of wasn't gaining any weight. And I think, it literally probably took her maybe a year of going to different doctors and different specialists. In the end, her and my dad paid privately to go to a Doctor to try and work out what was wrong. At first, they kind of just said that, some babies are difficult to feed, some babies do struggle to put on weight and they kinda said that, it's not something to worry about. And then when I started kinda sitting up and kind of like I could lay on my tummy at first and lift my head up but after a couple of months of gaining that ability, I kind of, I lost it. So I would fall over quite easily from sitting up and I stopped being able to lift my head up and things like that. And at that point, they kind of said that, Yeah, there obviously wasn't something wrong with my development, but I was kind of called, like a failure to thrive baby I think it was. And they kinda just said, there wasn't really any secure reason for it, it was just a thing. And then yeah, I was diagnosed at 18 months with SMA, it was originally diagnosed as type 1 and they kind of said that I wouldn't live until like, more than two years probably and I was already 18 months at that point. But I was then sent to a specialist, who was really, really excellent and she diagnosed me with type 2 and kind of said that, what they said about the condition wasn't really correct or anything. So it was quite a long and like slow process for my parents from what they've told me. Yeah, I mean thank you for sharing that. It's something I can relate to. So I'm a little bit older than you and I had pretty much the same experience. We had to go to a vast majority of specialists, who thought they knew what they were doing, and being told certain things and I'm originally from South Africa and the medical system is not as ahead as what it is here in the UK, so... I was gonna say, I wondered... I wonder what the difference was? Yeah. We had to see 15 different doctors before we realised. Wow. What was wrong, and why it was happening and pretty much the same story, where we were given life expectancies and all that jazz and at first there's nothing wrong, there's nothing wrong, it's just normal. And eventually someone took it seriously and did the right tests to confirm my diagnosis. I actually only got given a type when I came to the UK. So I was just given... Oh, wow. The title of SMA. That's interesting. No specific type, so my... I can totally relate to that. The next question I have for you is, at the time of your diagnosis, from your parents and yourself, what kind of support was available to you and your family? I think, emotional support is kind of a different aspect, I'll come back to that but I think, physically they did kind of once I've had that diagnosis, from what I know, they did kind of throw a lot into it. I remember, I think, within literally a couple of weeks, I was cast with a body brace, to kind of help my spine not deteriorate so quickly, which I know for younger kids now, they're not that keen on doing, which I find really strange, because it was literally only, because I had that brace from so young that I was able to wait for spinal surgery until I was 12. So I was given lots of different appointments for physios and yeah, I think, I had weekly physiotherapy until I was 13, 14 and I think, it was only then, that it stopped, because I decided that I didn't need it anymore. I was capable of doing it myself with my carers. I think, I was given... Yeah, there was quite a lot of kind of physio and rehabil... Not rehabilitation, but that sort of area of support given. There wasn't really any support given in terms of like more medical support. So up until I was about five, I was in and out of hospital constantly, probably for six months of the year, in total. And it was only when I turned five, that they gave me a gastrostomy, which is like a peg that goes into my stomach. So I can be given medication and kind of supplements, if I'm not able to eat properly. And they also gave me a BiPAP, which is an overnight ventilator, to sleep with at night and that kind of literally within a space of a couple of weeks, kind of managed to turn things around, because... Yeah, it meant that I was able to rest with my lungs, and to kind of prevent infections and things. And I was actually, able to start putting on weight, because I could kind of get the nutrition I needed. But that aspect of it took a long time, for them to kind of take action, rather than just kind of listening to my parents and saying, Oh, hopefully it will get better. In terms, of emotional support, I'll be honest, I don't... From what I've heard from my parents, I don't think, they were given much emotional support at all. I think they were quite lucky, in the fact, that my parents were obviously very close and they did kind of go through it all together. And I think, they did kind of have the resources, if they needed the emotional support to pay privately, but I know that obviously most people don't have that option. So I think, the emotional and like kind of mental support, is an area that's really lacking after diagnosis. And I also didn't receive any kind of care support, until I was, I think, five. So it was only when I went on the BiPAP and they saw that I had obviously, I was deemed as having very like more medical needs, that they gave the support. And even though, my mum had my brother when I was three. So she was at home trying to do all of my care and care for my newborn brother and my dad worked away with his job. So it was only once it was deemed more medically necessary, that they provided care support. Okay. And you said that you've been involved with SMA UK, even before it was called SMA UK. Yeah. At later part. Briefly, what is that... How's that experience been for you? Yeah, it's been great. I mean, I think, it was kind of like a salvation for my parents. I think, it was kind of one of the main ways that my mum, obviously, found kind of friends that were in similar situations and knew what she was going through. With regards to obviously like having a child with a disability. There was also like an amazing way to get kind of knowledge of like what to do and what not to do. I think a lot of kind of doctors, they can give advice, but they don't really understand the difficulty of balancing what a five year old wants to do, compared with you need to do four hours of physio a day. So I think the advice that they give isn't always kind of that feasible. And so I think, a lot of that aspect was great. I know she used to... I think, it was almost like her body system... And where I think people with newly diagnosed children were paired with parents and more experienced, like children that had SMA and they would kind of provide that weekly support or just like almost like phone counselling maybe, but more just like, yeah, general support. And we used to go to the conferences, every other year or whenever they run basically. We'd go to the conferences, yeah every time, and we'd also go to like the Christmas dinners that they were doing stuff and it was just like a really nice way to meet people like with my condition, and families in a similar situation'cause I kind of went to a school, it did have a kind of support like a disabled support system. But I... Most of my friends like just ended up being everybody to yourselves kind of, just because they were... So I didn't have that many friends that kind of were like me or knew exactly what it was like and stuff. So it's really nice. Okay. Well, that's really great to hear. I think again, that's something that I can relate to, because since I've been in the UK, SMA UK have been instrumental in the foundation that I've built here and the knowledge that I have, I mean, I know more about SMA UK in the 20 months I've been in the UK, in comparison to what I had to find myself in South Africa, for the first 35 years of my life. So... Yeah. That's crazy. That's fantastic to hear. Yeah. It's really great to hear that there are still similar stories out there, so that I'm not alone. And you're definitely not. Last question would be, what would you tell your younger self? I think, probably the biggest thing that I would tell my younger self, is to kind of not be afraid of how other people might judge me, because of how I have to do things. I think, when I was younger, I decided like I... A lot of situations, if I had to participate differently, I decided not to participate at all. And I think, that was looking back, that was definitely to my own detriment. I mean... I don't know if you had them when you were a kid in South Africa, but we used to go on, PGL trips with the school, where it was like weekends away and it would be kind of like camping or in kind of dormitories, and doing kind of like survival skills or things like that. And I decided that, because I couldn't go on my own, I would've had to take my mum or a carer. And then I would've had to probably sleep, in a different room, I chose not to go at all. Because I was worried how children would judge me or... Yeah, I don't know really. And I think, because I chose not to go, I missed out on it all. There was no possibility of having a good time, despite having to kind of do it differently because... Yeah, I excluded myself. So I think, the biggest thing I would say to myself is go... If there is something that I wanna do, then you might have to do it differently, but that doesn't mean that it won't still be fun, and you won't still kind of make good memories and things. That's fantastic advice, I think. Again, I can relate, there were situations where I chose I'm not going to partake in an activity. And there were times when I did and regretted that the previous time I didn't. So... Yeah. It's completely understandable. I think, when we younger, we sometimes just choose the easiest route and that's not sometimes the best route. So... I really appreciate you sharing that with us. Thank you, for sharing your story and what your journey has been like so far. And we look forward to hearing from you again sometime soon, to see what your up to and how much chaos you're causing in the world. Yeah. Thank you, for having me. Awesome. Thank you very much. Thank you. You've been listening to the living with SMA podcast. We hope you can join us again next time. But in the meantime, please, don't forget to like and subscribe. So you don't miss an episode. You can find out more on our website at smauk.org.uk.