Katie along with Co-host Cortney Given, host of the podcast Mindset for Medical Moms , interviews Dana who had micro-preemie twins at home. She bravely shares her story and how she and her husband acted quickly with the unexpected home birth. Dana shares how she...
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
Connect with Ryan
Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.
Parents, download our free parent starter kit.
When you download our starter kit, you’ll learn how to:
- Give medicine to your child without it becoming a wrestling match
- Prepare your child (and yourself) for a shot so they can feel less anxious
- Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.
Child life specialists, get affordable PDUs on-demand here.
Shop for your CLOC gear here.
You Might Also Like…
Episode 160 | Jodi’s Story – HELLP Syndrome and a Premature Birth
Katie has a co-host, Serheen Noor Ali from Hello Sleuth on today's episode where we hear Jodi's story of developing HELLP Syndrome and having a premature birth. Jodi walks us through her birth story along with those first moments meeting her daughter. She speaks to...
Episode 158 | Kristen’s Story – Licensed Family Therapist – Anxiety in Children
On today's episode, Katie meets with Kristen McNeely, a Licensed family therapist who is in expert on Anxiety in Children. Kristen shares the importance of how we respond to anxiety as parents and caregivers, helping children understand what anxiety is and how we can...
