Marie’s story

This is the story of my little full t18 warrior, Marie, who will turn 2 on the 11th of April. She was a tiny baby, born weighing 13,67 pounds and 26,77 inches long. She is a miracle :)

She was not supposed to live more than a few minutes at birth and then they said a few hours and a few weeks… She has been refused surgery because of her t18. She is 23 months old despite her Congenital Heart Defects and her oxygen levels only being between 72 - 84%.

She often catches colds and sometimes has a throat infection, but she has never had to go to hospital or the Emergency Room. She has Synagis (a prescription medication used to help prevent a serious lung disease caused by respiratory syncytial virus in children) in winter to limit her risks.

She regularly has organs ultra sounds and has physiotherapy each week. She doesn’t have a feeding tube and drinks milks, eats vegetables and fruit and loves it! Her hips have been repaired thanks to a Pavlik harness (a type of brace) and she wears a hearing aid.

We are proud of her each day. Each day is a victory and every bit of progress is magical.

She has taught us to see life differently - to take time to appreciate every little thing. She has taught us and everyone she meets a wonderful life lesson as she is always smiling and often laughs. She loves playing and she likes us to read her stories.

We wouldn’t want her to be any different because we are proud of our special baby. She is strong. The only thing we would want to change is her limited lifetime. She is a precious gift. Our life with her is the best journey. Our love is unconditional and we just have to take care of her and ensure she has no pain. Her life is about loving and being loved. Each day with her is definitively a miracle gift.

We are from France but I have been following SOFT UK since she was born.

Valérie Roy, Marie’s Mum