368. A Father's Fighting Chance Against Duchenne Muscular Dystrophy: Mazi Keyghobadi

What's life?  What kind of world are we leaving for our children?  Mazi Keyghobadi shares his battle against muscular dystrophy for his son's future.  He believes you need to speak your mind and contribute!  He is leading by example.

There's only one other person that has the rare form of muscular dystrophy that Mazi Keyghobadi's son has.  It wakes up part of you you never knew existed.  In this heart-stirring episode of Better Call Daddy, we meet Mazi Keyghobadi, a father whose love knows no bounds. Mazi is the co-founder of Hope for Luka, a nonprofit organization named after his seven-year-old son, who battles a rare form of muscular dystrophy. With the tenacity of a warrior and the heart of a lion, Mazi shares his family's journey through the trials and tribulations of seeking a chance for Luca to live a normal life.

 

Mazi's story is one of sacrifice, determination, and the relentless pursuit of hope. From selling his car to pouring his life savings into research, he embodies the spirit of a parent who will stop at nothing to give his child a fighting chance. His quest leads him to the forefront of scientific research, where he collaborates with leading experts and navigates the complex world of fundraising and advocacy.

 

But this episode is more than just a tale of a father's love. It's a call to action for anyone with a dream, a reminder that sometimes the most significant victories come from the heart. Mazi's message is clear: see the strength in those who fight battles unseen, hear their voices, and appreciate the heroes who live among us.

 

Join Reena Friedman Watts as she delves into the depths of a father's soul, exploring the power of unwavering faith and the beauty of a bond that defies all odds. Better Call Daddy: The Safe Space for Controversy.

 

Connect with Mazi and support his mission at hopeforluka.org, and be part of the movement that champions the extraordinary lives of children like Luca.

 

Go Fund Me page

https://www.gofundme.com/f/raising-130k-to-fund-preclinical-research-study

 

Mazi on Linkedin

https://www.linkedin.com/in/mazi-keyghobadi-55a92493/

 

PPMD (Parent Project Muscular Dystrophy)

https://www.parentprojectmd.org

TREAT-NMD is a global network of experts in the neuromuscular field

https://www.treat-nmd.org/

 

Better Call Daddy: The Safe Space for Controversy.

 

Connect with Reena:

https://bettercalldaddy.com

https://linkedin.com/in/reenafriedmanwatts

https://twitter.com/reenareena

https://instagram.com/reenafriedmanwatts

https://instagram.com/bettercalldaddypodcast

 

We'd love to hear from you. Drop us a review—reviews help more people find the show—and let us know what you like and what you'd like us to explore next.

 

Share this episode with someone who could be inspired by Mazi's story and help spread the hope for Luca and many others facing similar challenges.

 

Show notes created by https://headliner.app

 

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📋 Episode Chapters

 

(00:00) Mazi Keyghobadi's son has a rare form of muscular dystrophy

(00:35) You sent me a video of Top Gun with Duchenne disease

(04:00) I actually had such a different interpretation that is really interesting, actually

(05:45) Your son was diagnosed with muscular dystrophy at 14 months old

(11:22) For kids with muscular dystrophy, those satellite cells get over produced

(16:38) Lily Brasch has a rare form of muscular dystrophy

(21:40) Go get somebody with muscular dystrophy and ask them questions about life

(21:52) Do you feel like God made your son this way? I feel universe

(27:42) When he was nine months old, I started telling him about Santa

(31:11) Lukian has a deletion and could potentially have a shorter life

(35:27) You formed a nonprofit to study the effects of deletion on muscular dystrophy

(40:52) Mazi met with researcher who is major figure in muscular dystrophy research

(45:55) A lot of self digging is required, because you do go down

(49:29) Nothing has been accomplished. Nothing has been done, you know?

(54:28) Every dollar that she's allocating to research is helping other kids right now

(55:24) It teaches you to have compassion. It's very simple. You care about the ones behind you

(58:55) It tore apart your marriage, but it also transformed your life

(01:02:06) Where are you today? With your son, with your nonprofit

(01:07:27) Ben and I are trying to start a nonprofit for Duchenne research

(01:09:54) How did you get your brothers to hop on board and support you in this way

(01:14:08) A chance to have a normal life is all I want for my son

(01:15:39) Luka asks for understanding and a little support for disabled kids

 

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