JoeyLynn Nolan

Joey Nolan is our second born son, and arrived with a bang on April 18th, 2019.

He took us on quite a medical journey, though we are forever grateful that he chose us for this ride of a lifetime. Early on, we knew that something was different about Joey, but never imagined the diagnosis of Tbc1d24 related disorder that we received on August 3rd, 2019. This disorder hosts quite a spectrum of severity, but unfortunately Joey was one of the most severe cases known. His Epilepsy was simply uncontrollable on even the most effective medications.

He left us on November 21st, 2019 at 7 months and 3 days of age in my arms.

Although his 7 months on earth were short, they were filled with magic and daily lessons in compassion. Lessons that continue years later. He was here for a profound reason, one that made his mark on all of us. We are all the better for having known him.

Joey had his gorgeous trademark smile, the sweetest, most pure soul, and the best kiss on the planet.

The times we heard him giggle, made every stress and struggle worth it.

Joey loved his big brother and protective big sister, and was most interactive when surrounded by their unconditional love.

Joey loved being outside, loved the breeze, and enjoyed relaxing on the beach with his family.

Joey touched the lives of so many, and brought many together, while spreading happiness and giving true perspective on our short lives here.

We are all blessed to have been in such a magical presence, and we know that our little kangaroo will never be forgotten.

Please help us raise funds in Joey's honor, that will create research for this unfair disorder that continues to take the lives of babies and children globally.

Thank you from the bottom of our hearts, We are forever grateful for the continued support our community has shown us.

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation, less platform fees, will go towards rare disease research.