FAMILY ADVOCATE
- Atypical Truth
- Jan 25, 2022
- 28 min read
Updated: Jan 4, 2023
KATIE PALMER - INTERNATIONAL NOONAN SYNDROME ADVOCATE
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
One day, Katie decided to do a hashtag search of her rare condition. Expecting to find only a few posts about the disease she lives with, Katie was surprised to find an entire community of caregivers sharing about their experiences.
In hopes of providing parents with a new outlook on their child’s condition, Katie began to share her adult perspective of growing up with Noonan Syndrome. Fast forward two years later and she is helping families from all over the world.
Katie is now an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.
[Image Description: Marigold background with a white font that reads, “Noonan Syndrome, Katie Palmer, International Family & Child Advocate.” Framed in a circle at the center of the image is a photo of Katie Palmer. KAtie is pictured smiling. She wears a flower crown in her short light brown hair that is blowing the wind like super model. Her bright green eyes shine through the frame of her black rimmed glasses. She wears a dark blue ruffled dress, with a marigold flower and white lace hem. The background is blurry, but it appears that she is outdoors and standing in the bright sunshine.]
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Episode Transcription
Erica 00:15
Welcome to Atypical Truth. I'm your host, Erica Jolene. Humans are storytelling beings. I created this podcast to amplify the stories of people in my community, the community of rare diseases, disabilities and complex medical conditions. Not only will you hear from my peers in this community, but you will also hear stories from friends, family, and professionals who advocate with us. My guest host for season two is Kristyn Newbern. She's a fellow mother and caregiver of her son Luke, who was born with the primary diagnosis of a congenital heart defect, and it was later discovered that he had a genetic disorder called Noonan Syndrome. Throughout this season, Kristyn shares the conversations she's had with many people who have made a lasting impression on their family throughout their complex medical journey with Luke.
Erica 01:19
I'm just going to go ahead and say it. Today's episode may be one of the most special episodes to date. Today, Kristyn is joined by Katie Palmer. Katie is an amazing young woman who lives with the same rare disease Luke has, Noonan Syndrome. Kristyn came to know Katie after seeing her posts in a Noonan syndrome Facebook group. Like many other parents in this group, reading Katie's words and learning about her life experiences, it brought an incredible amount of comfort to Kristyn. Today we share with you Kristyn and Katie's first time meeting and getting to talk over zoom. This conversation with Katie, it was everything I didn't know I needed. After listening to her talk, I felt a shift of hopefulness within me that was a long overdue. In fact, I think you will too. That doesn't mean that her story is all rainbows and sunshine. In fact, she shares quite openly about the deep pain she's experienced in life. But what she has done with that pain, how she has gone on to help parents and children all around the world - it's a really something I think the world needs more of.
Luke 02:42
That one is Katie?
Katie 02:45
Hi Luke! How are you doing?
Luke 02:48
Gooood
Katie 02:49
Good?! That's awesome. Have you been having a fun day?
Kristyn 02:53
Do you, do you remember what question you were going to ask Katie?
Luke 02:59
What's your favorite color?
Katie 03:01
Oh, what's my favorite color? My favorite color is pink.
Kristyn 03:05
Pink. What about your's, Luke?
Luke 03:08
Brown.
Katie 03:10
Brown!
Kristyn 03:12
What other question do you have for Katie?
Luke 03:15
Is it lunch time?
Katie 03:17
Is it lunchtime? No, not over here in the UK, darlin. It's nighttime here and I'm ready to go to bed.
Luke 03:23
Ohhh.
Kristyn 03:24
Remember, do you remember your globe?
Luke 03:26
Yeah.
Kristyn 03:28
And how sometimes we point to the different places that other people live?
Luke 03:32
Yeah.
Kristyn 03:33
Katie lives on one of those other places she lives...Do you want to ask her where she lives?
Luke 03:37
Where do you live?
Katie 03:39
I live in Wales!
Kristyn 03:41
Wales.
Katie 03:42
And we have a flag that represents Wales and it's a big dragon on there. It's a big red dragon. Should I show you? Luke do you want to see the Welsh flag?
Kristyn 03:51
Yeah, you want to see the flag with a dragon.
Luke 03:53
Yes Please. Woooooooah!
Kristyn 04:00
That's so cool!
Luke 04:02
Thank you for talking to me, Katie!
Katie 04:06
You're welcome, darling.
Luke 04:07
I hope you have a good day!
Katie 04:11
Thank you for talking to me and asking me awesome questions.
Kristyn 04:15
Did you, do you have any more questions for Katie? Just gonna go play.
Katie 04:20
Haha. Bye!
Kristyn 04:25
Thank you so much for joining me today to have this conversation.
Katie 04:29
So good to be here.
Kristyn 04:30
Yes, definitely. We've got so much to talk about and I cannot wait to dive in. Let's start with just a few quick-hitter questions.
Katie 04:40
Yeah!
Kristyn 04:41
First, what is the best way to spend a rainy afternoon?
Katie 04:45
Um, I would say reading. I love reading. I always used to be like storytelling in schools and writing my own stories.
Kristyn 04:54
Wonderful. If you were asked to write a newspaper article today, what would you write it about?
Katie 05:01
Probably Noonan syndrome.
Kristyn 05:03
A good choice, but I might be biased. What is a totally achievable goal that you plan to accomplish in the next five years?
Katie 05:13
Well, I would love to travel to America and Holland, where I've helped many families and parents who have come to me from across the world. So like to go here and help them in person or hold like conferences, where they can come and meet me, like conference in Los Angeles would be amazing.
Kristyn 05:30
Tell me when you make it happen, and I will buy my plane ticket. (both laugh) What is one thing you are presently grateful for?
Katie 05:39
Being able to help parents, so when parents come to me, it's very humbling. I love how they trust me and have the courage to come to me in such a difficult time with a child being diagnosed or if their child is already diagnosed and their searching for answers and questions. And yeah. I love it.
Kristyn 05:59
Well, I have might be able to speak for all of the other parents out there. But that is something we are also very grateful for as well.
Katie 06:08
Thank you.
Kristyn 06:09
So Katie, you are a unique guest on my season, because I do not know you personally, even though sometimes it feels like I do. The way that I know you is that when I found Luke's diagnosis, I decided to join a few social media groups for people who were also affected by Noonan syndrome. My goal in joining those groups was to learn more about the diagnosis, and really to feel a connection with other people that were traveling a similar path. And I found so many people with so many different experiences all around the world. I would say a lot of the posts that I saw, were really connecting, educational. But your posts, in particular, started to stand out amongst the rest. You are a young adult with Noonan syndrome, you have graciously and generously offered your perspective on navigating childhood, adolescence, and now adulthood with this diagnosis on this public platform. I want to dive into your outreach, your advocacy in this community. But first, many of our listeners might not be familiar with Noonan syndrome. So let's start there. Can you tell me from your perspective, some of the ways Noonan syndrome generally presents and how it has impacted your life?
Katie 07:36
Okay, so it is a really rare condition. We have this like really, weird saying, it goes like, "the most common rare condition you've never heard of."
Kristyn 07:47
Oh, my goodness, where are the T shirts? (both laughing) I hope you're okay with me borrowing that and using it. I think that's so spot on. It speaks to how I feel whenever I'm trying to explain it to anyone who's never heard of it before.
Katie 08:08
Noonan syndrome has lots of different varients. It can be SOS1 when and SHOC2, which is my mutation. It can go anywhere from developmental delay, heart problems, speech problems, anything like that, fcial features. I am diagnosed with a heart condition hypertrophic cardiomyopathy, and I do have some like short stature, the thin hair.
Kristyn 08:36
One thing I have learned in joining these social media groups in reading about Noonan's. One thing I continue to find is just how different Yeah, Noonan syndrome could affect anyone who's diagnosed. There are different variants of Noonan syndrome, but even two people with the exact same genetic variants could present with entirely different challenges or conditions or, you know, features, or anything like that. And so,
Katie 09:09
Yeah.
Katie 09:09
It's been interesting, but also, I admit, frustrating sometimes. Just because, of course, we all want to connect and relate and help each other in these groups.
Erica 09:27
Connecting and relating to others, is exactly what led Katie to become the advocate that she is today for both parents of young children with Noonan syndrome. In a worldwide group of over 7,000 members - and growing, Katie bravely holds nothing back when it comes to sharing about her personal experiences and the difficulties growing up with Noonan syndrome. Her willingness to be honest and vulnerable, it is the very thing that has instilled so much hope and gratitude for both parents and children alike.
Kristyn 10:08
Tell me about your decision to share your experience in this way.
Katie 10:12
With other conditions which a lot of children may have, you can go to local support groups. But you're not going to find that with Noonan syndrome, you're not going to find a local support group with Noonan syndrome. It started in a pandemic, I was just on Instagram, and I was like, "Hang on a minute, I'm going to hashtag my condition." So I went to a search engine, and I typed in Noonan syndrome, and all this stuff came up. There wasn't many, because obviously, it's a rare condition. But there were some posts, and I clicked on a post, and it came up, and the little girl had the same mutation as me. So I started messaging a mother, and she was really keen on, on learning about my life. And then she led me to the support group on Facebook. So that's where it all began, really. I didn't expect to help parents and have parents coming to me from all across the world. I do have many messages and many questions. A lot of parents come to me and ask me what the child's life is going to be like and the development. So I can't really answer what their child's difficulties are going to be because it varies so much from person to person. but I can give my life and what has been challenging to me.
Kristyn 11:32
Does it ever get overwhelming?
Katie 11:34
Ummmm, yeah, it can get overwhelming. I think that anybody who works with families can tell you that. But however, it brings a lot of connections. And I think that's just what's brilliant about it. And I'd love it. So it can get overwhelming, but I wouldn't want to change thing. So yeah, I love it.
Kristyn 11:59
I think it's really amazing that one connection with one child and one parent led to this. Really a global network, you know?
Kristyn 12:13
I know, it's crazy!
Kristyn 12:14
We talk about it, this is an extremely rare genetic condition. And yet this group has 7,000 members, right? So, and of course, not all of the members have that diagnosis, but they are very connected to it. And they have someone in their life that they care about who does have that diagnosis. You've quickly accumulated so many connections, and so many people to relate to who are so interested in reaching out. Have there been any in particular that really stand out to you in the last year or so?
Katie 12:52
Yes, I guess I am going on a Zoom straight after this now with with a little girl and her parents. And last year, I sent them a Christmas present. And they've sent me one back. So that was really cool.
Kristyn 13:05
That's so cool.
Katie 13:06
Yeah, so don't get some beautiful messages and beautiful comments, saying that they've made them better parents. I've helped them navigate the child diagnosis. So so as really always humbling to me.
Kristyn 13:18
Oh, yes, I'm sure it's true. And, you know, admittedly, I on these groups, I'm kind of a more of a reader on a lot of these groups. Right? So I don't think I've ever reached out to you personally, before, but I know you have impacted my life in such a way, my parenthood, and you probably didn't even know I was, you know, they're reading so. So imagine all of the feedback you have received multiplied by so many of us who just who have been reading and, and sharing in your experience. So you have supported so many through sharing your experiences and offering support to others. Many of these people are experiencing childhood, adolescence, and young adulthood with Noonan syndrome, and they're navigating it all in this able-structured society. Tell me about what that was like for you. When you were growing up, going to school, graduating from school, now into adulthood? What did navigating that able structured society look like for you along the way?
Katie 14:27
So, I guess it was quite difficult because I knew I was different. I weren't ever bullied or nothing that. I've been quite lucky in that area, quite fortunate. But I knew I was different. I've always been accepted. So I can't really come in, come one here and say that I've been discriminated in any way or things. When I went to college, you were brilliant. They understood. So I was I was really lucky in that area.
Kristyn 14:56
Do you remember any particular story or experience that speaks to your childhood and how Noonan syndrome might have affected your your upbringing?
Katie 15:11
In a positive way I could say. When I was, like two years old, we went to Canada to meet Jackie Noonan, the who one who discovered Noonan syndrome all together. And before that, we fundraised to go. My whole community did a bike ride through the streets and they raised a lot of money for me to go over to Canada to meet this woman. From what I've been told this was amazing experience and we all took so much away from that.
Kristyn 15:45
It's wild that, I guess I never really even questioned who discovered that I just assumed it was someone way, way, way back in history. You know, it's, it's, it's wild to have a diagnosis where you can meet the living person who had discovered it. So, I think that speaks to, you know, we talked about how rare it is, but also how new how newly discovered, yes. Wow. So as a parent of a young child with who has been recently diagnosed with a new variant of Noonan syndrome. So Luke has one of the variants of Noonan syndrome that was discovered in 2015. And we found that out in 2018. So very, very soon after it was discovered. One of the most difficult parts of our journey is not having that clarity on what to expect, or what to prepare for the future with Luke. You know, as as planners, and as very organized people, at least, in theory, that's been extremely difficult for our family is just that unknown and that uncertainty. I think that's certainly what has made your posts reading about the obstacles that you've overcome the accomplishments, your life experiences, it gives us this connection. It's it's that possibility that potential for the future that we we hope for Luke and for other kids with this. You've been that connection for us, but for so many parents of kids with Noonan syndrome. And you had the amazing idea to open up the opportunity for other parents in our social media groups to ask questions for you to answer on this episode. So I'd love to ask you some questions from those other parents around the world. And have you answered those now.
Kristyn 17:57
So the first question we have comes from Claudia in Chile. Just a note that this question has been translated to English. So Claudia, please forgive me if there are any errors in translation. Claudia asked Katie, at what age did you find out that you had Noonan syndrome? And how did you find out?
Katie 18:17
So I was diagnosed at 12 years old, so not that long ago. So even though I went to Canada at two years old, it wasn't until they found that I had Noonan syndrome SHOC2 until I was twelve. It was suspected, all the signs will leading to Noonan syndrome. But I wasn't diagnosed until the twelve years old.
Kristyn 18:39
Were you part of that discovery?
Katie 18:42
Yes.
Kristyn 18:43
With your parents, or did they tell you?
Katie 18:47
Well, I went to the appointment with them. Yes.
Kristyn 18:50
I think that's something that, you know, Claudia, and I certainly share in asking that question. But she also asks, what is the ideal way to communicate to our children as they start coming of age, that they have this?
Katie 19:05
Right. Okay, so it's different for different ages. It depends on the child's age, it depends on the child's maturity. And it depends on the child's understanding. You might have a three year who has a has been recently diagnosed with that Noonan syndrome. So you just might bring it up. You wouldn't want to be like, "Oh, what's happening?" Maybe at a dinner table, or just really calm atmosphere, and there are amazing books to support this conversation. So you might say, "Oh, I have a book for you. Shall we read it like before bed?" Even though these books are completely amazing, a book isn't ever going to replace a conversation between a parent and a child. So this book is going to be a really ideal to read to your child, but that connection between parent and child needs to happen first. You might have a 12 year old who's just been diagnosed with Noonan syndrome, so you might dive a little bit more into their characteristics, and what the life might be like. So yeah, all depends on the child's understanding the maturity really.
Kristyn 20:16
When you received your diagnosis at twelve, what was your initial response? Did you want to learn everything you could about the syndrome? Did you even really worry about it at all at that point?
Katie 20:29
No not really, I was at I was still a kid, and I didn't really.
Kristyn 20:34
How did your parents handle receiving that diagnosis with you? Did they have ongoing conversation with you about it? Was it you know, part of your everyday life? Or did it not really play into very many things?
Katie 20:50
No, because we suspected so early on, when we went to Canada. We just all grew up knowing. I just. yeah.
Kristyn 20:59
It was more confirmation.
Katie 21:00
Yes. Yes,
Kristyn 21:01
Than discovery.
Katie 21:02
Yeah.
Kristyn 21:03
That makes sense. So our next question comes from Rachel from Oregon asks: as raising a seven year old girl with Noonan syndrome, I would like to know what challenges she may face as she gets to middle school or high school age.
Katie 21:19
Right? Okay, so I'm going to go into my school right here now. Ummm, I went to a special school. Because of the physical aspects of my condition, high school wouldn't accommodate me. And that was like really difficult, because I knew I was different. It wasn't like I was oblivious to what was going on in a mainstream school and what would happen in a special school. So I started feeling that. I knew straight away that everything was different. The children from my neighborhood, peers from my neighborhood, was in mainstream, and I was in a special school. And that was like a really difficult time for me. It caused a lot of hurt. And I'm not just talking about who I go over in a couple of weeks, I'm talking about like, deep, deep hurt. I was different, like near wet. So in August, over here in August, every year, we have a day where students go and collect GCSE's - is an exam over here which 16 year olds take in school. The special school didn't do any sort of exams, whereas the mainstream did. So that was the account. When GCSE results say would arrive, I'd hurt it would be really painful. It got to the point where I just couldn't watch a TV because it's plastered all over the news, all over the newspapers, on TV. So I just couldn't do it, I got too much where, I'd have to turn the TV off because it was, it hurt me that much that I couldn't do these exams, along with my peers who were in mainstream. So yeah.
Katie 23:04
However, that being said, being in a special school, it was eye opening. It put a full new perspective on my life, and even know I was so desperate to do GCSE's and work alongside my peers. Has the special school made me a more grounded and more compassionate person, and more accepting person of disabilities, of medical conditions? Has it made me a better person? Has just made me more kinder, more empathetic person? Yes, truly. So going back to the question, she obviously is going to know she's different. So just like support her. And it doesn't mean she's not going to achieve whatever she said that she wants in her in her life. I went to a special school like I just told you, and I didn't do GCSE's, like done like no obvious qualifications that are going to get you into a job. So when I went to college, I had to start from a bottom. So I had to do basic Math and English. But I'm here, I'm doing a level-three teaching assistant course. Like it doesn't define what you're going to achieve. It doesn't define what your child can achieve. Each flower blooms that their own time, right? And it just took a little bit longer for me to do that. I was on my unique path. I bloomed in my own time. And yeah, I'm here. I'm living life and I'm doing a teaching assistant course which I'm really enjoying. And I've had amazing feedback. And I'm just about to go to schools doing placement with the kids. So yeah.
Kristyn 24:53
I'm sorry, I'm trying to hold it together here. That is, that's, that's incredible Katie.
Katie 25:03
Thank you. So like, if I can just leave this with parents tonight that they can hold on to hope that their child is going to get where they want to be. Or if your child does have developmental delays, which is going to impact them intelluctually, just because they can't get an ordinary job, or say shop assistant, or school teacher, or admin...that doesn't mean they are not going to get a job, and you're not going to achieve whatever they love. That doesn't mean that you're not going to become the next author. That doesn't mean any not going to come in next, digital drawing, whatever these things are called. That doesn't mean that like, Erica, that doesn't mean that they are going to do their own podcast, they can achieve something. They can. You just have to hold on to hope.
Kristyn 25:55
Oh, that is just just trying to hold it together. That is just so...that's so wonderful to hear. And, yeah, thank you.
Katie 26:07
Every flower blooms at a different at different times, and your child is on their own unique path. And even though their path is going to be challenging, is going to take longer than the average child who may achieve something at 18, get a job at 18, get a job at 19. I'm twenty-four and I'm only going into teaching assistance right now. But even though that has taken longer for me, I just realized now, at all that hurt or pain I went through not being able to do GCSE's, even though it was really difficult. I didn't know back then, that I would achieve. There was just no hope. I just didn't have any hope at all. I started to fear out what my life would be like. Fast forward to now, and yeah, I'm achieving, I'm on this amazing path of teaching assistance, helping parents globally. Yeah, each flower blooms in their own time. And I just want parents to realize that.
Kristyn 27:15
as I learn more, and as I have these more of these conversations, it feels like such an such an ableist-society mentality that we are all on some sort of race track, or comparison, or just because someone did something in this way means that we need to do it in the same way.
Katie 27:41
Yeah, yeah.
Kristyn 27:42
And I hope. I mean, it's how we were all it's how everyone has been raised. It's what society measures us on. And it's so refreshing. And it's so important to hear the reality that it's not true.
Katie 27:58
But part of my advocacy as well, I've had parents even come to me and tell me this it is I focus more on the positives. And even though I'm really honest, in some of the challenges that I have faced and your children are going to face, I will be honest with you, they will be open with. But I always really want to focus on the positives. When finally get to take a diagnosis, doctors probably focus on all the negatives. Your child's not going to walk, your child's not going to talk, you child's not going to achieve anything, the child is not going to go to a mainstream school - which is true for some. which was true for myself. But I think doctors outlook, professionals outlook is that your child is going to live this really dependent life. They're always going to be dependent on you, are not gonna achieve anything, are not going to be successful. But that is not true. No one tells you how much joy they're gonna bring, how much happiness you're gonna feel, and how much pride you're going to have seen them grow up and see and turn into this, grow into this, beautiful child who is always always going to dance to the beat of their own drum.
Kristyn 29:12
No one's telling that to the parents. They're also not telling it to anyone else. No one. You know? So we, we need to have your message, Katie, heard, not only for those of us who are raising children with Noonan syndrome, but everyone benefits from that message. And we need to make that very consistent and accepted in our world. That leads in nicely to our next question from Ariel from California. She asks: From your perspective and experience, what are the most important things that parents can be doing to support their kids with Noonan syndrome? And I relate very closely to Ariel who says: especially for those of us parents who do not have Noonan syndrome ourselves. I'm sure there are things that we might not realize or understand about our children's experience. What are some things we can be doing to support them?
Katie 30:16
Just like advocate, advocate, advocate, advocate. You can never advocate too much. And just support them through by other they challenges may be, emotionally I'm speaking now just...
Kristyn 30:31
Be theere.
Katie 30:31
Yes.
Kristyn 30:32
Advocate. Kimberly asked: Do you ever worry about marriage or children in the future?
Katie 30:41
Yes, absolutely. Yeah. I wonder if I am ever going to find a relationship. Whether I'm going to be accepted or someone's going to be like, "Nope, I'm not taking your condition on." Am I going to be too much of a responsibility, even though like I'm really independent and self-care in all aspects of my life. But are they going to be put off by what looks like a responsibility? As we're having children, yes, I do worry about that. And I worry about it every day. And I wonder if I am going to ever have my own children biologically. But my heart is also open to adoption. I would love to adopt someday. And I often think to myself, because having our own biological children will bring a 50/50 percent chance of passing this genetic condition down to my child. So I often think to myself, am I leaning more towards adoption than I am bringing my own child into the world, when they see a child out there in the world looking for home?
Kristyn 31:54
These are such heavy things to weigh on you and for you to consider, in addition to just how heavy marriage and parenthood it is, in general. I wanted to maybe ask Erica, who has I know at least maybe dealt with some of that? On personally, experiencing marriage and parenthood?
Erica 32:22
Sure. Yeah. It was hard. It was my own barrier for a long time.
Katie 32:28
Yeah.
Erica 32:29
I think my fears about what someone else would perceive as a burden, my fears about what if my needs look different in a few years, because I never know if my voice and my vocal cords are going to stop working again. So I had to get over my own fears. And that's not easy, because I think I'm still working on it every single day. But I think when I did start working on that, it, it built a certain confidence in me that just helped me to rewrite my own story. And it sounds like, in some ways, I feel like Katie, that's a path that you're on. Is this taking control of your narrative?
Katie 33:15
Yeah.
Erica 33:16
And the confidence and the empowerment that that brings, it shapes you. And it becomes a part of those things that I never knew or beautiful about me.
Katie 33:29
Yes.
Erica 33:29
Those are things that my husband is deeply attracted to. And I have had crappy partners. I've had people that have said, "Well, I don't know if we could ever have kids. Because like, what if they had what you were born with?"
Katie 33:44
Yeah, that's what Yeah, that's something I fear as well.
Erica 33:48
It was so hurtful. And you know, what's crazy is I stayed with that person for longer than I should have, because I had to learn that I was more valuable than that. That person couldn't see my value.
Katie 34:01
Yeah.
Erica 34:01
you know, it's just like, your statement. Each flower blooms at a different time. I feel like love and relationships, they enter your life at the time when they're meant to.
Katie 34:13
Yeah.
Erica 34:13
I don't think I ever would have found love if I kept being my own worst enemy when it came to the department of love.
Katie 34:21
Yeah.
Kristyn 34:26
Erica, I think one of my favorite things that you're touching on here and something that, you know, Katie, you brought up and really from that question, I mean, we're always as parents, we are always worried about our children's futures, right? It's all like, we're also worried about these things we cannot control. But I worry about Luke's future with marriage, children, his relationships. As he becomes more independence - he is four right now. I can that imagine a time where I am not in full control of his every move and, you know, decision, but that will come very quickly. So I worry about that. And my goal as he grows is for him to always know how valuable he is, and not to undervalue himself or think that he owes something to a partner because of his diagnosis, or you know, that that in any way makes him less appealing or attractive or deserving of love.
Katie 35:36
Yeah.
Kristyn 35:37
You know, it's something that I think confidence is important, but it's really more of a more of a self-awareness of value.
Katie 35:45
Yeah.
Kristyn 35:45
So Kimberly asked us the the wonderful question about, you know, the future and marriage and children. I am so excited that Kimberly's daughter, London, asked a couple of questions as well. She asked, were kids ever mean to you? And do you like your hair short?
Katie 36:07
London is so sweet! I absolutely loved London. So London, darling, I was very lucky. And no kids were the mean, to me, they didn't say means things. And I was very fortunate in that area, my darling. As for my hair short, ummmm...I have good days, and I have bad days. As of now, I would like my hair to be a little bit longer. But overall, I'm quite confident about it. And I hope you are too.
Kristyn 36:35
I love it, I just love it. And then finally, we'll end our guest guest questions with Joanne, who asked: What has been your biggest challenge that you've overcome? And what do you think or who do you think has helped you the most with it?
Katie 36:54
Okay, so we're going to go back to education on this one and the special school. That was my biggest challenge, because I felt it so deeply. That I wasn't able to do with a GCSE's. If I went to mainstream school and mainstream did accommodate my physical needs, then maybe I would have been able to deal with those GCSE's, but because mainstream didn't accommodate me, they didn't include me. That wasn't the case. And so yeah, that was my biggest challenge emotionally. And I think just recently, joining the groups, has helped me, because I've seen so many other children who have gone through challenges like this. But who are now adults and I know have now graduated university.
Kristyn 37:43
How beautiful that helping others has been what's helped you?
Katie 37:49
Yes, definitely.
Erica 37:54
I can relate to that. I think my first few opportunities to share my story and know that it was helping someone. Wow, it just, it was life changing for me. Like it kind of made everything else make sense.
Katie 38:09
Yes, definitely.
Erica 38:12
I know that when I've had parents reach out, specifically about children growing up with trachs and what that's like it, the conditions in which their children require trachs, there's just such a broad spectrum. And my experience is my own. Just like, you know, how I experienced certain things in childhood that you didn't, I'm sure, with like London's question, she might be experiencing bullying.
Katie 38:40
Yeah.
Erica 38:40
But maybe you didn't. So it's just such a huge responsibility to answer some of these questions. And I'm curious, how do you navigate that?
Katie 38:50
It's pretty difficult because I don't know the child in person. So I can't really see the development. So it's really like difficult to navigate. So I try to focus on the positives, but I'm fairly honest with parents as well and focus on challenges. I don't like to call them negatives, because they not, but challenges and difficulties. So I am very open about that as well. Actually, someone once told me that you can only answer questions based on your living truth. That's what I'm trying to do today. And that's what I'm trying to remember as we go through this podcast. So yeah.
Kristyn 39:32
I think that's, that's so it's so important to understand, from that parent's perspective, or someone who's a caregiver for someone with a rare diagnosis or condition is just to understand that even if you find a connection or an experience, or you get to listen to someone who's had an experience in that realm that that it's okay if yours is different, even from that closer connection. Even within the Noonan Syndrome Community, Luke's heart journey has been devastating, and so intens,e and invasive, and disappointing, and has so many complications, and unexplained challenges. Even within that community where heart conditions are very commonplace for many of people with Noonan syndrome, so I find myself almost doing that measuring that we were talking about, that comparison. And that, you know, I have to actively remind myself that that is not the point here.
Erica 40:50
Kristin is right, the whole point of going online to find others who share your rare condition or your child's rare condition, it's about finding connection. It's about meeting other people who have a shared understanding of the otherwise not so typical life experiences. From the basic understanding of having your health and well-being managed by a team of specialists to the more detailed understanding of navigating similar treatments or procedures. Finding a group of people who understand the nuances of your life, I mean, it's really priceless. However, as Kristyn mentions, it can also be very hard, especially when you or your child's path veers from what is considered standard, even within the community of people with a shared rare disease. And that happens more often than not. For example, when a treatment or procedure works for the majority of others, but doesn't work for you or your child. This can definitely lead to feeling more isolated. And it's so hard not to compare your experiences to others, especially when you're tied by this extremely rare commonality.
Katie 42:08
Yeah, so I did do a post once in the group. And I honestly asked parents, have you ever compared your child to another child? And all the answers did say yes. And that's absolutely okay. It's valid. We have all done it, I've done to myself. And it's understanding and of course, you are going to feel these emotions as a parent as you navigate parenting differently.
Kristyn 42:38
It's almost what you do with that knowledge that counts, right? Or what you do with that comparison.
Katie 42:44
As this game goes, comparison is the thief of joy.
Erica 43:13
I did not grow up in a community where someone like me, existed. At least in my local community. And I grew up during a time when there really wasn't internet or social media. And I just wanted to ask when you were growing up, did you have a way to reach out to other people with Noonan Syndrome?
Katie 43:32
No, because obviously, we didn't have Zoom. We didn't have Facebook. So you know...
Erica 43:38
You and I didn't grow up with representation. Right? You didn't see someone in TV...
Katie 43:43
No, No, No.
Erica 43:43
...with Noonan Syndrome. I didn't see someone on TV with a trach. I didn't hear them on the radio, I didn't see them on social media,
Katie 43:50
Yeah. Yeah. That was, that is no one's fault, obviously, because it's such a vague and we asked, we have such rare conditions, because I've never heard of your condition before. I guess you didn't know of Noonan Syndrome before you met us. That's what I want to do. That's what I want to think throughout my journey of helping parents. I want to be this person that they can show their child to and say, "Oh, hey, I know someone needs Noonan Syndrome. Do you want to speak to her?" So yeah, that's what I want to bring.
Erica 44:26
I love that. And I think that's so necessary. We need more of that. You are an incredibly... just for being 24 years old and doing what you're doing, I am so impressed. You may feel like you're behind but the reality is you are much further than some of us in this life. You're changing lives of kids just to see themselves as adults. So keep that in mind.
Katie 44:50
Thank you.
Erica 44:52
This was amazing, and I'm just really grateful.
Kristyn 44:55
Yes, thank you so much.
Katie 44:59
It's been amazing. He connected you guys to
Erica 45:08
It is our tradition on this podcast to ask people that miracle question at the end of every episode. It's a solution-focused therapy technique that challenges one to envision and describe in detail how the future would look different when a problem is no longer present. So to end this episode, I'm going to answer that question myself. If a miracle happened overnight, and I woke up tomorrow, to a more perfect world, the first thing I would notice, which would indicate that this change had happened, it would be more disability representation in all areas of life. That means more people with disabilities being supported and elevated to positions within society that we do not typically see today. Not only would we see more people with diverse disabilities in respected positions of influence, policy, and legislation; but also systems would be in place making the process and education to obtain these positions more accessible. Our life experiences as disabled people, they would be taken into account and would be weighed equally to our educational and professional experiences. The miracle would be that it would become commonplace to see and hear from more people with disabilities, more people like Katie.
Erica 46:40
Hearing Katie's story, it really made me think, I mean, really think. Our experiences are similar, and yet, so very different. Where I took one path, she took another. Neither path being better than the other, just different. So much of it was not a choice of our own, but more choices that society made for us. Hearing Katie, explain that everyone is like a flower and we all bloom at her own time - that was exactly what I needed to hear. It really provided the perspective that I needed, not just for myself, but for my children as well. So thank you, Katie.
Erica 47:26
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