19 - Part 4: SMA Life Through The Ages

Welcome to the Living With SMA Podcast.

PART 4 provides a fitting finale to a Episode 19 of the #LivingWithSMA Podcast.  SMA UK Host Luis Canto E Castro chats to 11 year old Sonny and his mum Grace 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.   

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, Sonny, Grace 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

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0:00:01.4 Intro: 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.

0:00:45.3 Luis Canto E Castro (LC): Hello everyone, and welcome to the next edition of living with SMA. Today, we have two wonderful guests with us, Grace and her son Sonny, and we are going to be talking about SMA, SMA awareness and what life is like since Sonny's been born. So if I can ask Grace, if you can first introduce yourself and then we can go with Sonny.

0:01:13.6 G: Yeah, absolutely. Hi, I'm Grace, I'm Sonny's mum and...

0:01:17.6 S: I'm Sonny.

0:01:21.1 LC: Awesome, so I guess, how old are you Sonny?

0:01:25.3 S: I'm 11 years old.

0:01:27.6 LC: Awesome.

0:01:28.4 G: Yeah.

0:01:30.0 LC: Awesome. What else can you tell us about yourself?

0:01:33.7 S: Well, I go to a lovely school. I have SMA, a condition that can be difficult, but it honestly is amazing once you figure it out.

0:02:01.4 LC: Good, good. I'm glad to hear that. One of the first questions I have is, when were you diagnosed with SMA, Sonny?

0:02:09.1 S: Well, I think I was diagnosed when I was around two years old.

0:02:17.1 G: You don't really remember, do you?

0:02:19.3 S: Not that much.

0:02:25.8 LC: Maybe that's a better question for you, Grace. So when was Sonny diagnosed and maybe what was that like for you guys finding that out?

0:02:28.5 G: So Sonny, I first saw traits or something different from about 12 months on, where he would, he was walking at 10 months, which is quite early, but he started walking, and at 12 months he would walk and just fall over, his knees would buckle, but it took me 12 to 18 months for the doctors to say, "Actually, it needs a little bit of investigation," and you went out a week before your second birthday to the Evelina London, and they did tests, quite invasive tests, if I'm honest, it was horrendous. Had no idea what was going on, all we thought was that he had, no offence, we thought he'd broken his kneecap or something really silly, and then we found out and we were told to look up SMA, and it was two days later that they got the blood test back to confirm that it was SMA, and that was two days before your second birthday that he was confirmed with SMA.

0:03:40.7 LC: Okay, and since you found out Sonny had SMA, what kind of support has been available to you in terms of information or help from clinicians? Are they talking about treatments or... What's been shared with you guys?

0:04:00.2 G: If I'm entirely honest, I have been very closed off to information. I don't like to read too much. I'm worried about what I'm gonna read. And I completely understand that SMA is so different to each individual child that I don't want to read something that's not necessarily gonna be applicable to Sonny. So I've just... We've just muddled through and got to each appointment and we've got new information about, "This is the next thing to look at." There are things out there, but I suppose we've hidden ourself from that and just got on with family life as we are. We've not branched out. We haven't had social workers. It's literally been his specialist in London and us. There's not been anyone else. We haven't got a big family network. It is immediate family, Mum and Dad, brother and sisters, and we've just muddled our way through until we went to our first meet, and that was the best thing we ever did. It really was.

0:05:11.6 LC: Okay, so I mean that's a great segue into the next question. Obviously, we met you at one of our recent Picnic in the Park events. Sonny, tell us a little bit about what that was like for you.

0:05:24.2 G: What was it like?

0:05:25.8 S: It was literally amazing since the second I got there till the second I left.

0:05:31.3 LC: Okay, and what...

0:05:31.8 S: And every... Of it was inspiring, learning about the things that you could do, the things that are available for you, it's just... It was just an amazing thing and...

0:05:48.0 G: Seeing other children as well in wheelchairs, and the teenagers in wheelchairs, and just feeling part of a group, wasn't it, really? That's how you felt, you went to me, "Oh my God. I'm not just on my own anymore. There's lots of us."

[laughter]

0:06:03.5 LC: Fantastic. I'm really glad to hear that. What was your favourite part, Sonny?

0:06:14.5 S: I liked it when you made your speech about everything we could do, about how your life had been.

0:06:21.5 LC: I'm really glad to hear that.

0:06:24.4 G: Yeah... Everything you do.

0:06:24.7 S: Yeah.

0:06:24.7 LC: I'm really glad to hear it. That's fantastic. I guess another question would be, now that you've found SMA UK, have you had a chance to look at the website? Are you hoping to attend more events? Are you looking for advice maybe from SMA UK? I mean, we're a resource to be reckoned with in my opinion. So I guess it would be great to hear from you guys. What do you think?

0:06:53.0 G: Oh, my goodness. Absolutely. Now we've been to our first meet, to be honest, I think it was more me. I wasn't ready, I'd gone through... And it sounds really selfish, actually, but I wasn't ready to be amongst other people and accept we were just a family getting on with life, but I think it got to a point where you were like, "I wanna meet other people like me," and it got to the point where I thought, "You know what? Let's give it a go, and I wish I'd never waited. I really wish that I'd never waited." And we went and the whole family, even younger siblings that haven't got SMA were like, "It's so nice to see other Sonnys," and that's how they put it, "It's so nice to see other Sonnys," and it was just about every single one, every single member of the family came away going, "What an amazing day it was," that, "I wish I'd done it sooner." I honestly, hand on heart, wish we'd done it sooner.

0:07:48.7 LC: That's your...

0:07:49.8 G: I suppose it's me that held us... I suppose not just me, just didn't want to stick out from the crowd that's just trying to continue life as normal and make ways for things, but we're part of the community, let's just embrace that, and it's been great, and we 100% would be like... Every single meeting, Sonny would be like, "I'm there."

0:08:10.8 LC: That's really great to hear. I mean I don't think it's selfish, I think that's the mum instinct kicking in and trying to give the best life for Sonny that you can, and it can be intimidating. I mean having a condition like SMA is life-changing, not just for Sonny, but for the family as well, and I think it was really great being able to interact with the whole family, and just to see how close together you guys are and how well your family dynamic is, coping with Sonny's condition. And Sonny is very young and life is going to be full of ups and downs, but Sonny has a fantastic outlook on life, which is really amazing to see, and I guess it's normal to feel that maybe it's better if we just stick to ourselves, so I'm really glad to hear that attending an event has changed your perspective, and it's great to hear that it had impact. I'm really happy about that. I guess one more question that I have for you, Grace, is, what would you tell your younger self looking at where you are now to where you were when Sonny was diagnosed?

0:09:38.8 G: Honestly, just reap like information, just limit what you can, but honestly, open it to the SMA community. I said from the day we met you guys, "I so wish I'd done this years ago 'cause it would have made my life, Sonny's life, better by knowing other families like, 100 million per cent, it would just be... " Just being open. I just personally didn't think I was ready, but actually I was ready years ago. Just be open and just be open about your feelings and thoughts and views 'cause there's so many hundreds of thousand people going through same as you that can relate to what you're feeling and thinking, whether it be your child, your brother, your sister, your mum, your dad, whatever it may be. I'm telling you, you want to speak to other people and be like, "Okay, I feel normal, I feel part of something." And I really wish, I really wish from... Dead wrong, we were advised at diagnosis, it was way too much information at that point to go, "Oh, we need to reach out to this." You just take that information and try and digest it but I would absolutely say, first port of call is bring yourselves or anything alike just to know that there's that support in the background, and 100% just, I don't know, I suppose open up everything, just the world, doesn't it? Inspiration for you and for us to realise we're not the only ones out there. We're not different. We're just living in a world of diversity.

0:11:21.1 LC: Yeah, absolutely. I think events are a good place to give perspective and talk to other people and use them as a sounding board to hear about their lives, about your lives and what's worked for them, what's worked for you, because what I've realised since being part of the SMA community in the UK is that a lot of people have ways of doing things that will help others, and it's a great space to share that, so I'm really glad to hear that. Sonny, I think let's do something a little bit different for you. Maybe tell us a little bit about what you wanna do with your future and where you think you're going and just what do you think that life has in store for you as you get older?

0:12:13.1 G: Oh. That's a big question, isn't it? I've been trying to get this answer out of him. So if you get one out of him, I'll be happy. But so...

0:12:20.1 S: I want to... Like SMA UK are doing, I want to grow up and help people with SMA. There's loads of people out there that don't know of SMA UK, and I want to try and spread that and I want to help everyone.

0:12:51.6 LC: That's amazing, I think that's a very big goal to work towards, Sonny. So good luck with that. I think that that's amazing. We all need more people like yourself out there just sharing that life with SMA is possible and we can be anything we want to be as long as we're willing to work towards it. So...

0:13:15.3 G: I just need to mention that up until the SMA meet, Sonny had no aspirations or goals. He was very much like, "I'm gonna be on my Xbox and... " You had... You're like, "Nothing's available to me," but after your speech, he was so... He literally came out of that... Talking to you and seeing you and what you've gone through in life, Sonny came by and said, "Mummy, I'm gonna cry because I'm so happy. I have got a really good... I can get a really good job, I've got a really good future." And he literally came away saying, "I'm gonna cry, I'm that happy." He never felt that it doesn't matter what people said to Mum, Dad, Danny, Granddad, family said, "You work it, you're gonna get there," until he met you and saw that another human with SMA out there doing his job. Sonny went, "I'm gonna do what Luis is doing. I'm gonna be that man." So I feel like I have to thank you for that, Luis, 'cause honestly, it's inspired Sonny so much. He's like, I'm gonna do your job.

0:14:19.5 LC: Thank you very much. I mean, I didn't think that I would be having that kind of an impact on anyone at the event, I just wanted to share my story, and I'm glad it had that result. And Sonny, if that's what you want to do, then we'll have to share some notes one day and make sure that you stick to that path. And I guess with that, I just want to thank both of you for your time and wanting to be here and sharing your story, and I really look forward to seeing what you achieve in the future, Sonny. Thank you very much.

0:14:57.3 Outro: 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.