Sep 27, 2019
Annette sits down to chat with Maria Hopfgarten, the author of the blog, Moments with Jacob. Maria lost her son Jacob to mitochondrial disease three years ago. Despite Jacob being very medically complex he lived for ten beautiful years. He fought every day to breathe, live, and spread happiness. He never uttered a word in his life, but he inspired more people than most of us will ever do.
In this podcast, Maria talks about why she started the blog which in the beginning, was a communication tool to let people know how Jacob was doing. At the time he was three years old. From there, she says it became beneficial to the community and therapeutic to her to write the blog. Many started to follow the blog and felt connected.
Maria also talks about how Jacob never spoke a word but made an enormous statement in the special needs community and beyond. He was the strongest and happiest person she had ever known.
Maria and Annette talk about siblings and how Jacob’s sister was so close to him. He always perked up when she visited him in the hospital. But Maria also speaks about how difficult it was on Jacobs sister over several years.
Maria speaks about the advice she gives to families and siblings, how to involve siblings in the care of a special needs loved one, and how to keep a family together when things get tough.
Annette and Maria also chat about their similar stories, taking care of a special needs child and the stress involved at all levels.
Maria has founded a charity called Miracles for Mito which helps families going through the same circumstances that both her and Annette have gone through raising a child with mitochondrial disease.
Connect with Maria and read her blog at:
Find out more about Miracles for Mito here; https://www.miraclesformito.org/