Help Lucas Gain Independence and Mobility

Hello all. My name is Tina Larioni and I am the proud aunt of a very strong, little boy named Lucas. Lucas was first referred for genetic testing and therapy at just 6 months old because he was not meeting his milestones. Since then, he and my sister’s (Kim) family have gone through countless doctor’s appointments, procedures, and referrals, traveling frequently to Shriner’s Hospital for Children and Children’s Hospital of Philadelphia trying to find a diagnosis for Lucas. In July of 2023, at 4.5 years old, he was finally diagnosed with Aicardi-Goutieres Syndrome (AGS), a rare genetic disorder that affects the brain, spinal cord, and immune system. It was a bittersweet day, finally having answers to so many questions that had accumulated over the years, but also the brutal reality of hardships and obstacles he will face that have yet to come as he gets older.

In AGS, the body’s immune system turns on itself in a destructive way, targeting the brain’s white matter (myelin). It is the loss of myelin that is responsible for the symptoms of AGS. For Lucas, this includes hypotonia, developmental delays, spasticity, drooling, low tone, a mitochondrial complex 1 deficiency, among other complications. This ultimately results in him not being able to walk, sit, or hold himself upright on his own, talk, and barely hold things with his hands. He has triumphed through every procedure with courage and bravery and maintained his infectious smile throughout it all. My sister’s family now faces another hardship as they strive to provide the best life possible for our little hero.

With Lucas growing and becoming heavier he relies on his wheelchair for his mobility. His family is in need of a wheelchair conversion van in order to be able to safely and comfortably transport him from place to place. Additionally, once Kim can prove to the insurance that they have the means to transport a power wheelchair, his doctor assures them he will get approved for one! This would give Lucas independent mobility for the first time in his life! And a power wheelchair not only grants him the gift of mobility, he will also be able to join a power soccer league and enjoy organized sports. Lucas dreams to be able to play sports, be a part of the comradery of a team, and be just like every other little boy.

Lucas is an avid WWE wrestling fan. He loves all sports, dressing up as his favorite characters, and listening to music, especially Taylor Swift.

Our family appreciates all the small blessings for our little guy. We triumph in his victories and pray hard when there are obstacles. I humbly ask for your help now. There are so many positive contingencies with acquiring this van. We are hosting a golf tournament to sponsor him on Sept. 7th at Sugarloaf Golf Course. I have shared that pamphlet but feel free to message me for details if you would like to participate in that. If you are unable to attend or would just like to donate to his cause, any amount, link share with friends and family on your page, thoughts and prayers are truly appreciated in this time of need.

Something that always amazes me is how people in our community have such a strong desire to give back and help others in their hour of need. I am truly humbled and reminded why we are considered NEPA strong and thank you for reading our story. ❤️