new Vici family

A few days ago Wendy emailed me two messages that came through liftinglila.org from families that said they had children with Vici syndrome. One lived in the Netherlands and the other was in Australia. I was so excited to connect with these families but had not received any contact info. Yesterday the family from the netherlands found me on facebook and today I actually talked to them on the phone! I hope they don't mind me sharing, but it was such a neat experience. Their daughter has a subtype of Vici syndrome, so she is not completely like Lila, for one thing she has dark curly hair, but her mutation is on the same chromosome and in the same place. (I am starting to think that Vici syndrome must have a wide spectrum of how kids are affected because I have seen kids die as young as five weeks and live as long as ten years. ) Their village in the netherlands has 13 children affected by the mutation! Five are still living. After years of trying to figure out what these children had they just got the answer in May.  They can trace all the children's genetics back to this one couple generations ago.  It is pretty amazing. We talked about our girls and shared how wonderful and challenging it can be to take care of these kids. I was impressed with how much they do to stimulate their daughter, entertaining Lila is always my constant struggle and reasons for lots of guilt. Their little one looks much stronger than Lila, she can sit in her wheelchair and move her head back and forth, lift her arms up and coos loudly. This subtype must not effect her strength as much as Lila's mutation does. They also seem to get more smiles than we do, something that makes me jealous but also grateful that we get any at all. They also mentioned that her favorite thing in the whole world is swimming! Just like Lila! It was so wonderful to talk to them and see pictures of their daughter. I feel like its meeting another member of my family.