The Glass Child - Being a Sibling to My Rare Disease Sisters with Madison McLaughlin

Once Upon A Gene

English - December 17, 2020 12:00 - 53 minutes - ★★★★★ - 258 ratings
Parenting Kids & Family advocate caregiver disability genetherapy genetics inclusion parenting raredisease rarediseasepodcast raredisorder Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed

Previous Episode: Effisode - Family Dinner

Next Episode: Cookies4Cures with Dana Perella

As a young girl, Madison McLaughlin made her way to LA to pursue acting and she's held roles in Chicago PD, Supernatural and Arrow. But she's also a rare disease super hero and celebrity in our community- the rare disease community. Madison's three younger sisters have been diagnosed with hypomyelination with brainstem and spinal cord involvement and leg spasticity (HBSL).

EPISODE HIGHLIGHTS
Can you share a bit about your sisters?
I'm the oldest of four girls. Marissa is 18, Mallory is 16 and Mahrynn is 14. Marissa and Mahrynn have an ultra-rare disease that affects less than 25 people in the world called HBSL. Mallory is also a carrier of this disease. Mallory has never had any symptoms and is typically developing. Marissa and Mahrynn use mobility assistance such as walkers and wheelchairs, but they're not affected cognitively.
When considering yourself a caregiver, how does it affect you in realizing that as your role?
What have people done for you to make you feel special?
When did you start therapy individually and as a family?
What boundaries have you set for yourself?
Are you a part of groups with siblings like you and is there a common thread among siblings?

LINKS AND RESOURCES MENTIONED
Once Upon a Gene Channel with The Disorder Channel
https://www.thedisordercollection.com/
Once Upon a Gene with The Disorder Channel on YouTube
https://www.youtube.com/watch?v=68ZUSyqdeZo&t=4s
Nikki McIntosh, Rare Mamas
https://raremamas.com/
MacPac Foundation
https://www.macpacfoundation.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/

EPISODE HIGHLIGHTS

Can you share a bit about your sisters?

I'm the oldest of four girls. Marissa is 18, Mallory is 16 and Mahrynn is 14. Marissa and Mahrynn have an ultra-rare disease that affects less than 25 people in the world called HBSL. Mallory is also a carrier of this disease. Mallory has never had any symptoms and is typically developing. Marissa and Mahrynn use mobility assistance such as walkers and wheelchairs, but they're not affected cognitively.

When considering yourself a caregiver, how does it affect you in realizing that as your role?

What have people done for you to make you feel special?

When did you start therapy individually and as a family?

What boundaries have you set for yourself?

Are you a part of groups with siblings like you and is there a common thread among siblings?

LINKS AND RESOURCES MENTIONED

Once Upon a Gene Channel with The Disorder Channel

https://www.thedisordercollection.com/

Once Upon a Gene with The Disorder Channel on YouTube

https://www.youtube.com/watch?v=68ZUSyqdeZo&t=4s

Nikki McIntosh, Rare Mamas

https://raremamas.com/