My daughter’s name is Emma. She is seven years old and was born with a rare syndrome called OHDO which is a mutation in a gene. Emma is non-verbal but able to understand everything and she can communicate with a few signs and gestures.

I am originally from Chile so I have no family around. My only support was my mother’s group but no one in the group could relate to any of my problems since they all had typical children with the usual problems. Emma’s life wasn't that easy in her first years of life. She was never able to access any funding because her condition was so rare, she didn’t fit into any funding category.

I joined support groups from around the world to find answers to all the unknowns that were leading to so many emergency visits to the hospital. All the answers came from the families of other kids around the world.

I had to become not only a mother but also a nurse, researcher, doctor, therapist and more. It wasn’t until Emma swallowed a rock in childcare that the doctors finally took notice and we received the treatments that Emma needed.

At five years old Emma started going to a specialist school, where her life and mine changed. I not only felt confident that she was safe but Emma was improving so much every day. This led to meeting amazing people through social media that gave me the courage to publish a book I wrote for Emma.

My book A Very Special GIFT is dedicated to Emma and all children living with disabilities, as well as typical children to help them understand that our differences are what make us “us” and that we all deserve a chance to shine.

A Very Special Gift is available to purchase here.