"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it." -Aspen, Willa's Mom In this episode of Child Life On Call, host Katie Taylor and guest...
Episode 159 | Ryan’s Story – A son with Muscular Dystrophy (Becker’s)
Podcast Show Notes
On today’s episode of the podcast, Katie interviews Ryan who’s son has Becker’s Muscular Dystrophy. Ryan tells the story of the road to diagnosis for his son Jack and how their family coped along the way. Hear about what fueled Ryan to start an organization to help fund research to change the lives of children and adults with Muscular Dystrophy. This episode is filled with inspiration, hope and the raw perspective of a father advocating for his son.
[4:20] Ryan Introduces himself
[7:24] They noticed Jack was toe walking at 3 years old
[9:20] Braces helped Jack walk flat footed
[11:11] Noticing a difference in Jack’s muscles
[12:30] Elevated protein levels indicate there is an issue
[13:36] Muscular Dystrophy diagnosis for Jack and other family members
[15:30] How Ryan coped with the diagnosis
[18:50] Learning very quickly who your people are
[20:00] Trust and rely on those who reach out to help
[21:06] A family friend explains Jack’s condition to his children
[23:00] The regret of past decisions
[25:09] Jack’s older sister’s positive impact
[27:39] The gift of the sibling relationship
[28:56] Creating an organization to find a solution
[30:20] As simple as a blood test
[31:55] Curing Muscular Dystrophy with gene therapy
[35:00] How a connection lead to the beginning of the research
[37:54] Going down a rabbit hole
[39:53] Accepting that we don’t have all the answers
[40:49] The level of bravery
[42:11] He teaches me more than I will ever teach him
[44:20] Stay tuned for published research
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