Help Julian Thrive: A Brighter Future

💜 Help Julian Thrive
Hi, my name is Carien, and this beautiful, mischievous little boy is my son, Julian. Julian lives with 9p deletion syndrome, a rare chromosomal disorder caused by a missing portion of chromosome 9. But his diagnosis isn't who he is. Julian is funny, adventurous, affectionate and incredibly determined. He loves being included in whatever his brothers are doing, has a smile that can change a room, and approaches life in his own wonderfully unique way. He is even brave enough to have a snake wrapped around his shoulders while his mother tries to remember how breathing works! 😂
Because 9p deletion syndrome is so rare, there isn't a simple roadmap for Julian's future. His medical and developmental needs can change as he grows, and one of our biggest concerns is making sure we don't miss something that could be identified, treated, monitored or supported.
🩺 A comprehensive medical assessment: One of our biggest goals is to have Julian properly assessed from head to toe. Depending on his doctors' recommendations, this may include neurological assessments,...