Baby Lorenzo - Beckwith-Wiedemann Syndrome

Baby Lorenzo was diagnosed with a rare genetic syndrome called Beckwith Wiedemann Spectrum (BWS). He had macroglossia (an enlarged, protruding tongue) which can caused obstruction of breathing and eating. Fortunately, he had glosectomy surgery which help reduce the length of his tongue. At 19 months old, his tongue reduction surgery was successful.  It reduced the length but the thickness is still the same. He is receiving speech and language therapy to help him learn who to use his new tongue. 

Children with BWS are at risk of having childhood cancer. So every 6 months he has cancer screening and blood drawn to help monitor any signs of childhood cancer. We recently discovered that he has a small percent chance of him developing cancer based on his chromosomal array panel results.

Also, we would like to keep Lorenzo in home day care instead of a group daycare 

Donations sent to Lorenzo will go towards medical bills, travel expenses to doctors and hospitals, any upcoming surgery, recovery from surgery, speech and language support and daycare. 

Thank you for all donations in advanced. We truly appreciate any support. Baby Lorenzo is such a joy! Laughing, smiling and saying new words everyday. He truly deserves all the support possible.

 

Thank you,

The Ciardi - Torres Family