55 Losing your child to a rare disease. Daniel DeFabio on Menkes Syndrome
“You may have a shorter life with your child but you still have a life with your child and some of this will be happy.” Daniel DeFabio on DADicated.com
Daniel DeFabio is married and a father of two boys, Alex and Lucas. Sadly Lucas quite recently passed away at the age of 11.5 due to Menkes Syndrome, a rare disease he had been diagnosed with at the age of 1.
Daniel shares how he adjusted his expectations of what raising a child might look like at the point of the diagnosis, his views and experiences as a rare dad, how he dealt with the loss, how the Lucas’s condition impacted the family and what helped him and his views on fathering a child that he knew he would lose.
The most powerful takeaways for me as a dad were:
- Parenting advice is almost always future orientated.
- Live in the moment, be ready to change your own expectations.
- When dealing with rare disease parents give an extra effort to include them.
Hope you’ll like it, thanks for listening.
To book Philipp as a keynote speaker on empowering dads and building successful families reach out via www.dadicated.com.
GUEST (Daniel DeFabio):
Philipp Hartmann (host):
- Philipp Hartmann: www.philipp-hartmann.de
- Philipp’s LinkedIn: https://www.linkedin.com/in/philipphartmann2
Weblinks from this episode:
- NYT article Philipp refers to (“How do you parent without a future, knowing that you will lose your child, bit by bit?): https://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html
Disorder: The Rare Disease Film Festival:
- Website: https://www.rarediseasefilmfestival.com/
- The Disorder Channel: www.thedisordercollection.com
- facebook: https://www.facebook.com/rarediseasefilmfestival
- instagram: https://www.instagram.com/disorderrarediseasefilms/
- LinkedIn: https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
Daniel DeFabio
Daniel DeFabio is married and a father of two boys, Alex and Lucas. Sadly Lucas quite recently passed away at the age of 11.5 due to Menkes Syndrome, a rare disease he had been diagnosed with at the age of 1.
Throughout his career, Daniel has looked at the landscape for what there is not, asked why not, and then asked if he could create what was missing. His passion and optimism have allowed me to recruit the best collaborators to my teams.
These “aha moments” have led Daniel to create (or co-create) the first animated series on the internet, an award-winning online social game, an internet browser safe for pre-reader kids, viral campaigns and online communities for star warriors William Shatner and Mark Hamill, two film festivals, and a TV channel dedicated to 7,000 rare diseases.
Whether as a marketer, storyteller, or advocate his end-product tends to be the same: increased awareness that inspires action. Wrapping new awareness up in compelling, entertaining stories isn't just a bonus it's a strategy.
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