In this powerful and heart-opening episode of Taboo Talk with Sarah, we welcome Ashley Haywood — devoted mum, accidental advocate, and the force behind Saving Sadie Ray. When her daughter Sadie was diagnosed with Sanfilippo syndrome, a rare and devastating form of childhood dementia, Ashley’s life changed in an instant. This is a story of a mother’s love in the face of the unimaginable — not just about medical journeys or rare diseases, but about memory, identity, advocacy, and choosing joy even in grief. Ashley shares Sadie’s diagnosis story, their experience with clinical trials, and the emotional rollercoaster of watching her daughter slowly lose words, abilities, and memories — all while still being the light of every room she enters. Raw, real, and deeply human — this conversation is for every parent navigating the unexpected, and every person who’s ever wondered how to hold joy and sorrow at the same time. “This isn’t just a story about Sadie Ray. It’s a story for every mum walking through a diagnosis they didn’t see coming.”
Sarah Jordan-Ross (00:00) Hey, welcome back to Taboo Talk with Sarah, the podcast that breaks the silence, fosters hope and talks about the tough stuff so you never feel alone. I'm your host, Sarah Jordan-Ross. I am a wife, a mum to three amazing boys. And I've spent the last 25 years in the health and wellbeing space as a therapist, but then also as a carer. And today's episode, I'm pretty sure is one that's going to stay with you.
It's raw, it's real, it's one mother's love poured out in the face of the unimaginable. Ashley Haywood is the mum behind Saving Sadie Ray, a movement that began not from strategy, but from survival. When her beautiful daughter Sadie was diagnosed with a rare heartbreaking condition, San Filippo, which I'll let Ashley explain it more later.
but it's a condition where the body's not able to break down sugars correctly and it leads to all sorts of problems, the worst being childhood dementia. Now, when faced with that, Ashley did what most moms do when faced with difficult circumstances. She fought. She's here today to share that fight with us, the highs, the heartaches, the things no parent should have to endure, but also
the hope found in that. This isn't just a story about Sadie Ray. It's a story for every mum walking through a diagnosis they didn't see coming. And if you're in the thick of it, you're not alone. So Ashley, thank you so much for joining us today. Before we get into the tough stuff, how about you tell us a little bit about Sadie Ray? What's she like? What lights her up?
Ashley Haywood (01:57)
So first of all, that was like an amazing introduction. Like you just making my head swell. I loved that. Thank you so much. I really appreciate that. And I really appreciate you having me on here. This is amazing. And this is what my purpose in life is, is to spread awareness and to be the help for others that are in the thick of it and don't know if they can get out of it.
Sarah Jordan-Ross (02:05)
You're very welcome.
Ashley Haywood (02:23)
You can eventually and then you'll go back in it too. So it's it's a cycle Okay, but for Sadie ⁓ Sadie's diagnosis is is a devastating diagnosis, but She is the happiest most joyful kid Like I've ever met and that I don't want to say that helps her diagnosis, but it does help me with her diagnosis It helps make the day-to-day
life a little bit more joyful. It's hard to be sad and upset around her because I mean, she just squeals and does her little stimming and it's hard to be sad and to dwell on those things that we know are coming. I mean, she's just always in a good mood. I mean, she has her days, but for the most part, she's in a good mood. Yeah. I mean, me too. Like I have my days where I don't, you know,
Sarah Jordan-Ross (03:16)
and every kid.
Ashley Haywood (03:22)
But as adults, kind of have to suppress that down and continue adulting. But kids can kind of be grumpy all day and it's, you know. But she is just very happy and very joyful. And I feel so blessed for that. She loves singing and dancing. You know, she's never met a stranger. She's just...
She has the biggest personality and it's really, I feel blessed that I get to be her mom, that I was the one that was picked to be for her. And yeah, yeah.
Sarah Jordan-Ross (04:03)
Being a mum is the greatest gift ever. While it's also the toughest job we ever do, it's the best job we ever get to have.
Ashley Haywood (04:13)
It really is. really is. It's like, it's so hard and it's hard to explain that to people that don't have kids. Like it's the hardest job you'll ever do, but it's also the most rewarding job that when your kid gives you a hug, like a genuine hug and says, love you. It's the world's fine for those few minutes. It's especially when you have it. Yeah. Especially when you have a kid with extra needs that
Sarah Jordan-Ross (04:34)
It makes everything else worth it.
Ashley Haywood (04:39)
worked so hard to say those words or to learn how to give a hug or it makes it even more worth it and even more special when one of those kiddos does that as opposed to a neurotypical kiddo.
Sarah Jordan-Ross (04:54)
So, when did you first notice that something wasn't quite right with Sadie? Can you walk us through what that was like?
Ashley Haywood (05:02)
So
our diagnosis story is a little odd. ⁓ Most kiddos with Sanfilippo, they progress normally for a couple years and then you kind of start to see some regression and that's when you get the diagnosis. But for Sadie, was, ⁓ her dad actually has a distant cousin. I think it's his like sixth cousin that also had Sanfilippo. So we knew it was in his family.
She was termed. She was 37 and a half weeks, ⁓ but was in the NICU for a really long time. She was having trouble breathing. She wasn't eating. ⁓ she had a brain hemorrhage and there were just, it was just, I questioned like this shouldn't be happening. She was termed. Like we have to figure there's something more. Like I had a mom instinct that I went with and I'm so glad that I did because the doctors were still, they were like, we still don't think it's.
anything like San Filippo, like it's just, she was born and her lungs were not fully developed and you know, so they still kind of, I don't want to say they dismissed me, but they were not on board with getting tested, but I pushed it and we got tested and at three months old is when we knew when we got her diagnosis and most kiddos with San Filippo don't get diagnosed until
I mean, it's different for a lot of kids, like five or six is usually, and it's usually misdiagnosed ⁓ because not a lot of doctors know about it. And so we were pretty lucky that we got that early diagnosis and we didn't really notice anything. I mean, since she was in the NICU for so long and she had that brain hemorrhage, she was behind on everything, but not, not too far behind. She was still doing really well. ⁓
She actually got into a clinical trial when she was three and did remarkably well in the clinical trial. She was in it for two years and business decisions happened. It was too expensive. They closed the study. and so probably around maybe six and a half is when we started seeing her
Forgetting things her memory was going she hurt it's like she would sing a song and she would forget some words or We would go through the ABCs and she would kind of get stuck. It was just kind of like a she was starting to forget things and now she She's probably considered nonverbal. She still has words and she'll still say them once in a while ⁓ But for the most part it's it's fill in the blanks like we'll sing a song and
She'll just fill in a couple words on the song. ⁓ So the communication has gotten a lot harder and that's been tough to know what her needs are. ⁓ And it's, she really doesn't have any other ways to communicate. We have a communication device, but it's not a, she doesn't really understand it enough to work it because cognitively she's probably around a two year old.
three year old age. So it's, kind of hard to know what she needs. If she gets fussy or grumpy, you know, I give her a snack and just, hopefully it's just cause she's hungry. You know, that's the first thing I try usually is maybe she's, her tummy's hurting, scrawling or something and she's hungry. So that's kind of what I try. But in the past, probably two years, she has
lost most of her words and a lot of her memory. Like she still knows like core people like grandparents and parents and the people that she's with a lot, but other people that she's kind of forgotten who they are. And it's really hard to watch that decline also. ⁓ thankfully for us, it has been slow. I know for some other families, it's like, over a month or two, it's like, they lose all the words, but ours was a slow.
Um, almost didn't really realize it was happening until you kind of look back, um, of how slow it was. So. Yeah.
Sarah Jordan-Ross (09:30)
still tough to go with when you had been able to communicate with your child and then all of a sudden or probably felt like all of a sudden when you realized oops we've lost those words and that all you can do is yeah
Ashley Haywood (09:32)
Mm-hmm.
Yeah, and you get to know this personality and you get to
be like, you know, my little best friend. And now she can't really tell me the things like she used to. And it's really hard. She can't say, love you. Like she'll say love. And I know that's, but she gives hugs more now. So I know she still has ways of saying things like that, but that's a hard one when your kid can't say, love you. that's.
And they used to like you never know that last time that they're going to say it. You know what I mean? Like it's I wish I had that last time on video, but I didn't know it was going to be the last time.
Sarah Jordan-Ross (10:17)
We never do.
Ashley Haywood (10:18)
I know, it's hard.
Sarah Jordan-Ross (10:20)
Yes, the journey of parenting always has its challenges, but when you add something like Sanfilippo, and for those watching who don't know what it is, because I will admit, I know a bit about a lot of different disorders, but this one, it was like, ooh, there's one I haven't heard of and...
Ashley Haywood (10:42)
Mm-hmm.
Sarah Jordan-Ross (10:50)
I've done work in the dementia space with adult carers of dementia sufferers, watching a child go through that just has that extra level of pain. But can you explain to us exactly what San Filippo is in mum terms? Because that's going to make it the easiest for everybody to get it. But also those...
Ashley Haywood (11:15)
Yeah. So it's, if I tell you the like
clinical thing, it's like, it's, you know, the sugar doesn't break down. It builds up. Yeah. Nobody, they're just like, what does that mean? It's so pretty much the kids when they're born, there's no issues. they progress normally until they're, it's different for every kid. So around five or six is kind of the average when they start to lose things and it'll start kind of like Sadie's has like they'll lose their memory, their speech.
Sarah Jordan-Ross (11:21)
whoosh
Ashley Haywood (11:46)
It's a slow, you you lose all of the skills that you had gained. So that's why they kind of liken it to a childhood dementia because it's you slowly forget and lose those skills and those abilities and ⁓ life expectancy for sanephily vocodos is around 15. ⁓ So there's no treatment, there's no cure. It's one of those things that is in the rare disease world that's just kind of overlooked because it
It's rare. There's not a lot of people that suffer from it and pharmaceutical companies don't know about it. They don't. It's hard to study. If there are medications for it, they're super hard to make or extremely expensive. And it's, it's one of those things that a lot of the studies that have come from San Felipe have been from parent organizations, like foundations that were
founded by parent groups. And there is a little bit of a hope. There is a drug that is at the FDA right now in America. They're trying to get it passed and they're hoping the end of the year that it'll be an approved treatment. The only thing with that is they've only studied it in younger kids.
And in San Felipa world Sadie's nine. So she's, she's like an old kid. and so they're, they're mainly targeting younger kids. And so I'm not sure if she will be able to be treated or what, how much of a difference it'll make since she is older in terms of San Felipa. And that's hard because we had the diagnosis so early. were, you know, when we first got that diagnosis, she was three months old.
And we had all the hope in the world, you know, we're going to change the world. She's going to get cured. Like, and it's just been a hard pill to swallow when it's, when you get to the point where it's like, she's an old child considering her San Felipe. Yeah. Yeah. And so she has aged out of a lot of the trials now. So it's, and we worked so hard. ⁓ when she was first diagnosed, we took her to.
Sarah Jordan-Ross (13:59)
she's only nine.
Ashley Haywood (14:11)
doctors all over the country that specialize in Sanfilippo or had studies in the pipeline just to, here's a baby, look how cute she is, treat her. In your next study, treat her. ⁓ But we got turned down a lot because she had that ⁓ brain hemorrhage at birth, so she has a VP shunt. And it's hard for a clinical trial, they have to know.
what the medication is doing and if it's fixing the San Felipo and it's hard when she had that shunt because we don't know if the the brain hemorrhage is causing the brain damage or the San Felipo. So it was like a it was a really tough spot to be in. But once she got a little older and the doctor saw like she knew all of her ABCs, she was talking in these very long sentences, you know.
Sarah Jordan-Ross (14:56)
episode.
Ashley Haywood (15:07)
She knew color shapes. She could count to like 15 at like three years old. Like, so the doctors knew that it was the brain hemorrhage didn't really bother that part of her brain. And that's how I think we were able to get in the study that we were in is because they didn't have a criteria that excluded her based on that. ⁓ but yeah, it, was a hard pill to swallow when I realized
She's old in San Filippo world. So she has kind of aged out of a lot of things and all the work we did. I'm still proud of that work and I still am working. Like I'm still doing the things because every little bit helps and any other kid that gets diagnosed, I don't want any doctor to ever tell a parent, you know, there's nothing we can do. Just take them home and have a good life and love them.
I mean, that's nice to say and it's genuine and it is the truth, but there should be more options.
Sarah Jordan-Ross (16:11)
think every parent we want to be able to do something to help our kiddos. you became an advocate whether you wanted to or not and you've pushed for her and you'll continue doing so. So what is it other than the not wanting any other mum to go through the same things that you have? What is it that drives you to
to keep going, to get that word out there.
Ashley Haywood (16:45)
I just really feel like to find any kind of treatment for these rare diseases, like you need the funding and to get the funding, you're going to have to get like social media has been great with fundraisers and raising awareness and whenever like we're out and about and even, you know, we go to Disney World or something and we get recognized that's like
That's really big for me because it means what we're doing. And honestly, I don't do the social media much. I have a sister, my sister-in-law is the one that does our social media pages. But when we get recognized out and about, like even in different states, it really shows that what we're doing is making a difference. And people know about this disease and you know.
four or five years ago, they probably never heard of this disease and they didn't really know anything about rare diseases in general. And I think that what drives us is it's like.
It's making a difference, just social media and it's free. And we get those memories. We take the videos, we take the pictures. And so we have those memories to look back on also. But then when we get recognized, and I tell people like on social media, like if you see us, you know, anywhere, like please stop and tell us that you follow us because that certifies to me that.
what we're doing is reaching people and it's making a difference. And people know about things that they would have never known about if it weren't for our page. And I think that's really big to spread awareness and hopefully get funding.
hopefully get treatments, cures something for these kiddos. And not just for Sadie's disease, for rare diseases in general, that they're very overlooked and it's, yeah.
Sarah Jordan-Ross (18:45)
is a little.
Yes, and it was social media that I found you and did the, ⁓ I need to talk to her because part of the reason why I started this show was I do have two, I have three little boys, but two of them have extra needs. One has ADHD, which a lot of mums are going through that. But then my oldest son was diagnosed with
Ashley Haywood (18:56)
Yeah.
Sarah Jordan-Ross (19:15)
pediatric multiple sclerosis when he was 12. Generally, MS doesn't hit until the 20s and unusual in a 12 year old boy. So, but as a massage therapist, I was talking to lots of people in clinic and I kept hearing very similar messages of feeling like you're in it all.
alone and it was well if everybody's telling me the same things then they're definitely not but that I wanted something to to start those conversations to start talking about what so many of us are going through so that people realize they're not alone because there is so many rare disorders out there that people feel like they're dealing with that by themselves so
Ashley Haywood (20:13)
And good on you for
starting this to advocate. That's amazing. It's, and it's, think for me, I didn't really realize that I was an advocate or a caregiver until, mean, somebody said it to me one time and I was like, I'm not, don't really feel like I'm a caregiver. Like I do mom things and they were like, but Sadie has extra needs. So like, you're not doing regular mom things you're doing extra. And that means you're.
Sarah Jordan-Ross (20:25)
You're just a mum doing what you do.
Ashley Haywood (20:42)
caregiving for her and I was like, ⁓ okay. I, okay. But like, you don't, when you're in it, you don't realize that you're caring. You're just doing it. You're just doing life and people, I don't love, I know people mean well, but when people say, you know, something like, you know, you were meant to be her mother or God only gives ⁓ special kids to special people. I was not.
I was not prepared for that.
Sarah Jordan-Ross (21:14)
No. It's not always
the compliment it's meant as.
Ashley Haywood (21:17)
I know they mean well and I always am like, thank you, know, very nice. But it's just one of those things like for the most part, I feel like all moms, this is what you do. You step up and you be a mom and this is what you have to do. I mean, I know there are kids in foster care and orphaned and different situations, but for the most part, I think most moms, this is what you do. I don't.
I was not prepared for this when I had Sadie. Like had no idea. Like I had to learn and figure out and.
I was not, there's nothing special about me. I've had to like learn and train myself and figure out and it's, so yeah, I know when people say that they mean well and I take it and I say thank you and it's so sweet, but a little bit of me is like, I don't love that. Cause there's nothing, I'm doing what I'm supposed to do. I'm being a mom.
Sarah Jordan-Ross (22:16)
it. You're just doing the mum thing because, well she's your first baby, you don't know any different. So, and I don't think any first time mum ever knows really what they're, what they're doing. I know I certainly didn't and I was an older mum so it's like...
Ashley Haywood (22:23)
That's right. Yeah.
See tomorrow.
Sarah Jordan-Ross (22:35)
I had lots of experience around other people's kids, it's a bit different when you're it 24-7. No! You can't hand them back and say, you take care of it. Like you can when it's someone else's kid.
Ashley Haywood (22:36)
Yeah.
Yeah, you can't see them all.
And the hospital doesn't give you like a
here's what you're supposed to do kind of list of what happens and no, they're just send the baby with you and it's kind of traumatic. Then you have a kid in the next you and that's even more traumatic and yeah, it's yeah. And then becoming an advocate like somebody told me one time I was an advocate and I was like, I don't I don't even really know what that means. But like what have I done to for you to think that I'm and they're like, well,
Sarah Jordan-Ross (22:54)
Yeah.
Yeah.
Yeah. ⁓
Ashley Haywood (23:18)
you know, you're advocating for her, like her school needs and her insurance needs and her equipment and all of these things. And I was like, I don't really feel like it's an advocate. Like that's just getting the stuff that we need. Yeah. I'm being a mom and I'm getting the stuff that we need. So it's kind of crazy to think of those two things. Like, I'm just a mom.
Sarah Jordan-Ross (23:45)
I'm doing a very tough job very well.
Ashley Haywood (23:48)
Thank you.
Sarah Jordan-Ross (23:49)
Now, with what she's going through, so you had all of the joy and the excitement of her learning all of those things and then now the grief of watching her lose those things. How do you hold space for both the sorrow and the joy that's part of that experience of being Sadie's mum?
Ashley Haywood (24:11)
That's been hard for me. Like I try to ignore the future, you know, even on social media, other families that I'm friends with and know sometimes I just scroll through their things so that I don't see what's coming. And I know that that's bad for me. I do have a therapist and she tells me I need to like feel all of my feelings and I do have a hard time with that.
but I've had to grieve so many different things that you don't really think about. I've had to grieve she's not ⁓ gonna play T-ball, she's not gonna be at a dance recital, she's not gonna go to prom, she's not gonna drive a car, just little things like that. I've had to grieve all of that and I think we have tried to do so many different things with her, like weird things.
she's gone to all these kinds of adaptive, like we've gone skiing, surfing, water, wakeboarding, rock climbing, indoor skydiving. Like she's done all kinds of things. And I think that's my way of coping and having those memories, because she enjoys them, but she's not going to remember them. But I'm going to have those memories. And I'll have that memory as opposed to another mom having a
Sarah Jordan-Ross (25:30)
You will.
Ashley Haywood (25:34)
a dance recital or prom or whatever it is. ⁓ But that is hard for me. do, I am bad about like not thinking about the future and just ignoring it. And I try to work on that, but it's easier to stay in my little bubble and not focus on the hard stuff. But I know that I need to. ⁓ But like I said, it's kind of hard too because
She's just this joyful kid that it's hard to think about sadness and grief when you're around her because she's happy.
Sarah Jordan-Ross (26:12)
that grief's going to come when it comes and I love that you're packing as much life as you can into the time that you have because you touched on it there's a lot of grief that comes before that final grief and that's the tricky thing with dementia
Ashley Haywood (26:15)
Yeah.
Yeah, that's the goal. Yeah.
Sarah Jordan-Ross (26:39)
whether it's with a child or or with an adult, it takes people from you twice in that like for the adult wise that person isn't the person you remember and that's that's hard and you have that grief for what could have been what might have been or what they've lost before you actually then finally
lose them and that's a hard space to be in.
Ashley Haywood (27:08)
It is,
it is. Yeah, learning their personality and like I said, being my little best friend and then now she doesn't remember all of the things and she knows who I am, but she can't tell me she loves me. It's, it is a very hard, it's a very hard thing.
Sarah Jordan-Ross (27:27)
So I hope that you are taking as good a care of you as you are of her. Sometimes that's hard.
Ashley Haywood (27:39)
It is, it's very hard. But
I have learned, you know, to be the best caregiver, which apparently I'm a caregiver. To be the best caregiver, yeah, I have to be the best version of me. And I do try to acknowledge that and take the time, but it is hard because life is hard.
Sarah Jordan-Ross (27:47)
All moms are.
Yes, and it doesn't matter what challenges you're facing. So what have been some of the things that have helped you get through?
Ashley Haywood (28:08)
I have a great support system. ⁓ Grandparents, aunts and uncles, Sadie's aunts and uncles are just amazing. And I think my friends, like that's my me time. When I get to go out and just, know, Sadie's at the grandparents and I can go out with my friends and just kind of be normal. It's, that is amazing. And I love doing that. And I also,
like to do things with her and like little play dates. That means a lot to me too because it's kind of the normalcy. ⁓ Even though she doesn't play like a normal kid, it's still like a normal thing to do. And I think that has helped me a lot. ⁓ And I think just having the support system is huge. I also have
church group that we have a local church and we're in a very small town and they have a special needs program they have a special needs ministry and that's huge especially in a small town yeah and we have a mom's Bible study that we meet and I mean sometimes we don't even talk about our lesson we just are talking about different things for our kiddos and I mean that's where you get the best resources is other families
Sarah Jordan-Ross (29:17)
Yeah, that's amazing.
Ashley Haywood (29:34)
And that has really helped me a lot is ⁓ having that group. And then also those moms that get it ⁓ and getting to meet with them like weekly. Yeah, it's, mean, I love my friends, but they don't get it and nothing against that. I mean, I don't want them to, but my friends that have kiddos with special needs, that group is just.
Sarah Jordan-Ross (29:46)
is huge.
Ashley Haywood (30:02)
I've learned so much from them, like resources and that has been very helpful for me.
Sarah Jordan-Ross (30:09)
and sometimes even just the simple thing of being able to say to somebody who understands just that, actually today I'm having a really rough day or just being able to let that mask drop and admit that, hey, it's not okay and know that somebody is going to say, yeah, I hear you, I see you, I get it.
Ashley Haywood (30:33)
Mm-hmm. And I don't even have to say anything sometimes, you know, like just them talking about their day. I'm like, I can relate so much to that. And I don't even have to say anything, but it's just so relatable.
That has been really amazing. And I think every...
Every caregiver of a kiddo with extra needs, you have to have that community and that support because they get it and it's so different.
Sarah Jordan-Ross (31:01)
because ⁓ it's a tough load to carry alone. And the beautiful thing is that when you find your tribe, you realize you're not actually carrying it alone. So what would you say to other mums in a similar position to you?
Ashley Haywood (31:22)
so many things. There's so many things. ⁓ I think the biggest thing is you have to learn. This is not the life that you chose, obviously, ⁓ but most people's lives aren't. But you have to figure out how to learn to love this life and be happy in this life and find the joy.
Sarah Jordan-Ross (31:24)
Yeah.
Ashley Haywood (31:52)
⁓ It's not going to be there every day. It may not be there for a week, but there is, you can find little bits of joy in even the simplest things. And you just have to learn how to love this life. It's, I you'll probably go through where you hate it and you wish it was so different, but you can't change it. And you just have to learn to love it.
Sarah Jordan-Ross (32:18)
don't think I can say anything better than that.
But I just want to thank you for being here, for sharing your heart, for telling us a little bit about your extra special girl. Now, if anyone did want to help, how's the best way for them to do that?
Ashley Haywood (32:42)
So we are on social media. We're on Facebook, Instagram and TikTok and you can search Saving Sadie Ray. And then we have also linked up with a foundation, a parent led foundation. was founded by two parents that there was no other foundation. So they were like, we got to do something. And it is the Cure San Felipa Foundation and they are a great resource. They're a great resource for families.
newly diagnosed families. They ⁓ have been very instrumental in helping clinical trials get started, funding them. ⁓ So check out Cures San Filippo Foundation and then you can search for us at Saving Sadie Ray.
Sarah Jordan-Ross (33:28)
And we will have the links in the show notes as well. So for every mum who's listening and facing the unknown, fighting silent battles every day, I want you to know you are not alone. Whether you're navigating rare conditions, endless appointments, because there always seems to be so many, or just the weight of trying to hold it all together.
for everyone around you. Your story matters and so do you. So please keep sharing your stories. And if you'd like to follow and support Ashley and Sadie Ray's journey, we'll have all of the links in the show notes for you as well. And please take a moment to share this episode with somebody who needs it, because
The truth is we never know what battles somebody else is facing and when our story might be the thing that makes the difference to them. Because it's when we talk about the hard stuff, we don't just raise awareness, we create community. And I'm very glad that Ashley is now part of our community. So until next time.
Take care of yourselves, take care of each other, and keep sharing your stories.
I'm Sarah Jordan Ross and this has been Taboo Talk. We'll see you next time.