This is my effort to compile the many writings and videos about Lucas in one place.
Of course there is the documentary “Menkes Disease: Finding Help & Hope” which led to establisheing a rare disease film festival, which led to launching a rare disease TV channel.
News coverage:
Rare Disease Families Cope With COVID - DNAscience blog April 2020
“The Home Office” -WRGB news6, April 2020
In son's rare disease diagnosis, father finds hope through - November 2019 SF Business Journal
Doctors And Scientists Together To Learn About Rare Diseases - WBUR September 2019
Terminal copper deficiency Menkes film unites families - Daily Mail UK September 2017
Rare Diseases on a Rare Day - Saratoga Today, March 2016
The Washington Post mentions Lucas and the film in the last part of this article. - August 2015
5-year-old Luke DeFabio to be Ballston Spa holiday parade Saratogian December 2013
WNYT did this story. in 2008 link no longer works.
Scroll down for some of the early blog posts.
And there are these blog posts on other sites:
Spotlight: An SLPs Perspective on Menkes Syndrome - Smart Speech Therapy November 2013
How Parenting a Dying Child Changed All My Expectations January 2015
The Film I Almost Couldn’t Make About My Son’s Disease - March 2015
Deciding when not to treat our child - August 2015
When the Last Best Hope in Your Rare Disease Journey Lets You Down - October 2015
To Parents Who Feel Overwhelmed by the Care for Their Newly Diagnosed Child - November 2015
WE BEAT ON, BOATS AGAINST THE CURRENT. - December 2017
HOPE IS A THING WITH TALONS. - December 2017
THE LEAST WONDERFUL TIME OF THE YEAR. - December 2017 (it’s a funny story)
Why I Struggle With Giving the 'Supermarket Answer' When Asked How My Child Is Doing- April 2018
The Cure We Don't Want - August 2018
GO HOME AND LOVE YOUR CHILD. - July 2018
THE PITFALLS OF HAPPY FACE ADVOCACY - December 2018
THE UNBEARABLE LIGHTNESS OF BEING ON OXYGEN - December 2019
WE'RE ALL RARE DISEASE FAMILIES NOW. - April 2020
A Nine-Year-Old on the Life and Loss of his Brother 1/26/2021 on Courageous Parents network
Losing a child in the time of Covid 2/23/2021 on CPN
Super-powered Grief. 3/15/2021 on CPN
Videos:
Menkes Disease - A Day in the Life - RDReport November 2015
Tina, Lucas and Daniel on The Mighty Live - January 2017 - first few seconds have no audio
Podcasts:
Special Father’s Network Dad to Dad podcast Sept. 11, 2020 two episodes
Grey Genetics Patient Stories podcast 9/1/20
Bo’s tribute on Stronger Every Day June 10, 2020
Being Dad, Dadicated Podcast December 2020
4 episodes of Once Upon a Gene in 2020 and 2021
The Beginners Guide to Rare Disease - January 14, 2021
In Loving Memory of Lucas DeFabio - June 7, 2020
Beyond Quarantine: Acceptance, Empathy, and a Better Normal - May 28, 2020
Films and Fatherhood - January 30, 2020
Daniel DeFabio on Disorder: The Rare ... - DNA Today episode #67
Several episodes of Once Upon a Gene TV, co-hosted by Daniel, mention Lucas. It is on The Disorder Channel.