When Grainne and Nathan Evans gave birth to their little girl Tessa, they were horrified after reading medical advice which recommended terminating pregnancies for children born with their daughter’s condition.
Tessa was born with arhinia, a rare condition which means she has no nose and problems with her sight.
Grainne said she read one medical report that said that babies like Tessa “have poor mental and physical abilities and it's best to terminate the pregnancy.
“That statement is false on so many levels."
Grainne and Nathan want to give hope to other parents of children like Tessa by going public with their story, which they hope will encourage the publishing of more reliable research.
Tessa is undergoing a first of its kind surgery in London where she will receive a nose mould, and the Evans are fundraising to help cover the costs of the procedure and travel expenses.
Grainne says: “It has been an unbelievable and at times heartbreaking year for us watching our tiny baby go through this and knowing that it is really only the beginning of her story. She has overcome so much already. As she has grown, our brave, baby girl has shown us how extraordinary she really is. She … has surpassed [everyone's] expectations by meeting every milestone and stealing the hearts of everyone she meets."