Help a Loving Family: Easing the Burden of a Fatal Diagnosis

Help these loving parents care for their twin babies battling an extremely rare genetic disease.  

Dear friends, family, co-workers and kindhearted strangers,

We are reaching out with heavy hearts and a desperate plea for help. Shannon and Joseph Iannacone are the proud parents of beautiful twin babies, Noelle and Theo (and let’s not forget their other 2 beautiful boys Vincent and Lucas). 

In 2024, this loving family joyfully prepared for the arrival of their twin babies, moving into a new home and upgrading their vehicle to accommodate their growing family. But their excitement quickly turned into heartbreak when, 2 weeks after their precious twins were born and in the NICU, they were diagnosed with a rare and devastating genetic disorder called Aicardi Goutieres Syndrome 5 which is part of Leukodystrophy. This is a genetic neurological disease affecting the white matter in the brain. The disease is severely progressive and problems get worse over time with major decline. Tragically, this means that these sweet babies may never walk or talk, may be severely handicapped, and will likely not live beyond their teenage years. Since birth, Theo and Noelle have endured constant medical interventions, including extended hospital stays, weekly hospital visits, emergency room visits, MRIs, blood transfusions, constant labs, and specialized care available only at the Children’s Hospital of Philadelphia (CHOP) with the direct specialty teams.  Noelle and Theo are the only boy/girl twins with this disease in the entire database.

This devastating diagnosis has turned Shannon and Josephs world completely upside down and life as they once knew it will never be the same. Understanding this is a rare disease with no cure, Shannon and Joseph are trying everything to help their babies and maintain life. Noelle and Theo are currently participating in a clinical trial where they are giving their twins medicine 3 times a day, but the medication only slows down the progression of the symptoms; it will not cure them. The medication is immune suppressant, so you can imagine, the babies have a severely compromised immune system and require 24-7 care.

Since the diagnosis, Shannon was left with no option and had to stop working to be a full-time caregiver to their twins which has impacted their financial status greatly. While her love and dedication are boundless, this has placed an enormous financial strain on their family, as Joseph works tirelessly to keep up with expenses.

The loss of income on Shannon’s end has become overwhelming and expenses have become far more than what one income can support.

We are humbly asking for your support to give this family a fighting chance to provide their babies with the care and resources they desperately need to try and maintain any bit of normal life for their family. Every donation, no matter the size, will go directly toward:

         -Easing the burden of daily living     expenses so they can focus on their children      

         -Supporting travel costs for continual visits to CHOP      

         -Housing, bills, ongoing and future expenses

If you are unable to donate, please consider sharing this with your friends, family, co-workers and community. Your generosity and prayers mean the world to Shannon and Joseph during their darkest moments.

Let’s come together to support Shannon and Joseph as they fight for their precious twins. Your kindness and compassion can help lighten their load and remind them that they are not alone in this journey.

Thank you for opening your heart to this family. Together, we can make a difference.

With gratitude,

Shannon and Josephs family and friends