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 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): LinkedIn: https://www.linkedin.com/in/daniel-defabio-79b3a61/ 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/ --- Send in a voice message: https://podcasters.spotify.com/pod/show/dadicateddotcom/message