A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen

ONCE UPON A GENE - EPISODE 116
A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen

Luke Rosen is a dadvocate who founded the KIF1A organization to seek a cure for his daughter Susannah who was diagnosed with KIF1A. Luke shares personal details about his recent medical difficulties and opens the raw dialogue around what happens when a caregiver dies. 

EPISODE HIGHLIGHTS

Can you tell us about your daughter and the KIF1A diagnosis?
Susannah was diagnosed at two years old with KIF1A and at the time we could only find about 15 people in the world and in literature who had the disease mutation. KIF1A is a neurodegenerative disease with no treatment or cure. We knew we had to find more kids, so my wife Sally and I started the KIF1A organization to pull a community of patients, researchers and clinicians together. 

Can you share about the medical difficulties you're personally facing?
About 9 months ago, I thought I had kidney stones, which I had before. I took medication, got better and then I couldn't get out of bed one day because I was in so much pain. I went in for a CAT scan and I discovered that I had perforated diverticulitis. I had surgery, experienced some complications and went home after 5 days in the hospital. When I went back for my postoperative follow up appointment, the doctor told me a lot of cancer was removed during the surgery and that I had stage 3 colon cancer. I immediately started to think of Susannah and the research I was doing for her, wondering what would happen when I died. 

As a man and dad, do you identify with keeping struggles to yourself or internalizing feelings?  
I understand the idea of men going it alone, dealing with things independently, but I don't handle things that way. I always go to my father because he makes me a better father through his advice and guidance. My rocks to lean on are my father, my brother and my wife Sally and without them, I couldn't deal with everything myself. I think it's important to check in with yourself and remind those you love to check in with you too.

What would you share with other parents who can relate to your story?
For parents of rare disease kids, plan ahead and find a focused community so that if a storm does hit, the team of people around you can keep seeking treatment for your child without you. If you do that, you can relax a little, survive and enjoy the time you have left knowing the work will forge ahead. 

LINKS & RESOURCES MENTIONED
KIF1A Website
https://www.kif1a.org/

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
Apple Podcasts
https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
Stitcher
https://www.stitcher.com/podcast/once-upon-a-gene
Overcast
https://overcast.fm/itunes1485249347/once-upon-a-gene

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

ONCE UPON A GENE - EPISODE 116

A Dads Fight to Survive Cancer and the Heavy Burdens of Rare Disease with Luke Rosen

Luke Rosen is a dadvocate who founded the KIF1A organization to seek a cure for his daughter Susannah who was diagnosed with KIF1A. Luke shares personal details about his recent medical difficulties and opens the raw dialogue around what happens when a caregiver dies. 

EPISODE HIGHLIGHTS

Can you tell us about your daughter and the KIF1A diagnosis?

Susannah was diagnosed at two years old with KIF1A and at the time we could only find about 15 people in the world and in literature who had the disease mutation. KIF1A is a neurodegenerative disease with no treatment or cure. We knew we had to find more kids, so my wife Sally and I started the KIF1A organization to pull a community of patients, researchers and clinicians together. 

Can you share about the medical difficulties you're personally facing?

About 9 months ago, I thought I had kidney stones, which I had before. I took medication, got better and then I couldn't get out of bed one day because I was in so much pain. I went in for a CAT scan and I discovered that I had perforated diverticulitis. I had surgery, experienced some complications and went home after 5 days in the hospital. When I went back for my postoperative follow up appointment, the doctor told me a lot of cancer was removed during the surgery and that I had stage 3 colon cancer. I immediately started to think of Susannah and the research I was doing for her, wondering what would happen when I died. 

As a man and dad, do you identify with keeping struggles to yourself or internalizing feelings?  

I understand the idea of men going it alone, dealing with things independently, but I don't handle things that way. I always go to my father because he makes me a better father through his advice and guidance. My rocks to lean on are my father, my brother and my wife Sally and without them, I couldn't deal with everything myself. I think it's important to check in with yourself and remind those you love to check in with you too.

What would you share with other parents who can relate to your story?

For parents of rare disease kids, plan ahead and find a focused community so that if a storm does hit, the team of people around you can keep seeking treatment for your child without you. If you do that, you can relax a little, survive and enjoy the time you have left knowing the work will forge ahead. 

LINKS & RESOURCES MENTIONED

KIF1A Website

https://www.kif1a.org/

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7

Apple Podcasts

https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347

Stitcher

https://www.stitcher.com/podcast/once-upon-a-gene

Overcast

https://overcast.fm/itunes1485249347/once-upon-a-gene

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/