The Glass Child – Being a Sibling to My Rare Disease Sisters with Madison McLaughlin
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
https://www.macpacfoundation.org/
TUNE INTO THE ONCE UPON A GENE PODCAST
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
https://www.stitcher.com/podcast/once-upon-a-gene
https://overcast.fm/itunes1485249347/once-upon-a-gene
CONNECT WITH EFFIE PARKS
https://twitter.com/OnceUponAGene
https://www.instagram.com/onceuponagene.podcast/?hl=en
