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.]
Links related to this episode:
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?