You are good at so many things, but you are great at taking care of your kids and don’t ever question that. Caregiver to caregiver what you are doing is hard, but you are so good at it.

Raising Rare is so excited to share this episode with you. Susan Geoghegan is an amazing mom of two rare babies given the challenge in life of Mitochondrial Disease effecting the FBXL4 gene.  

Susan’s journey into parenthood was not what she had planned, but as a business owner and wedding planner she soon learned that she was going to have to plan things in a much different way and pivoting always had to be an option. 

In 2016 Susan was experiencing a wonderful first pregnancy that quickly took a turn as she developed pre-eclampsia soon after starting the third trimester. As Susan was starting to stabilize they realized that her unborn daughter was crashing and needed to be brought into this world through an emergency c-section at 33 weeks. She was tiny even for a pre-mie and spent the next 77 days in the NICU. During her stay Susan and her husband were given the news that their beautiful baby had a Mitochondrial disease that effects FBXL4 gene and she was only the 31st documented case worldwide, but also that their was a 25% chance of this being passed to any future children as well.  As a family it was decided very early on that those 2-5 projected years would be the best possible, and would be a life of impact. In 2019, Susan and her husband welcomed their sweet son Benji to the world, his diagnosis came much earlier as they had down genetic testing prior to birth. 

Lorelie passed in July of 2021 after coming down with a common headcold and a realization (and fear) of how fragile their health is as a family. Susan now experiences anticipatory grief as she sees signs in Benji of his declining and things that she recognizes happening with Lorelie that at the time they just believed was common due to her age. For Susan, therapy has helped with the grief but is an ongoing process in grounding and learning.

Susan has truly taken on her promise to have Lorelie’s life be one of impact and is truly giving back to other caregivers and the rare community. Not only do they raise money for current research at CHOP on FBXL4 gene, but she also started her own podcast, When Autumn Comes, and a foundation, The Apricity Hope Project. Susan’s podcast has helped her connect with moms of rare kiddos but also bereaved moms as well. Both her podcast and foundation offer hope to caregivers and help shine a light for them when they are in the darkest parts of their journey. In the first 6 months as an organization, The Apricity Hope Project has sent 75 care packages (described as a package filled with items that you would expect to receive if your best friend was the one sending it), and offers hospital go bags filled with everything you might need to survive an unexpected hospital stay as well as some new and exciting projects that are just getting started.

Susan would love to connect, please feel free to check out her website, podcast, or reach her by email.

https://apricityhope.org/

https://apricityhope.org/when-autumn-comes-podcast/

hello@apricityhope.org