55 Losing your child to a rare disease. Daniel DeFabio on Menkes Syndrome
Description
“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 where:
- 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
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- instagram: https://www.instagram.com/disorderrarediseasefilms/
- LinkedIn: https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/