Daniel Thompson and Georgina Wells haven't had time to rejoice for their new baby, just when they were on a 12-week scan, they were told that their baby had a rare disease forebrain - (a rare head Disease, the baby's brain is outside the skull -)
Despite being told that their child, Ava-Marie, survived only a few minutes after birth, the couple decided to live a life of “almost like an ordinary family”.
The baby, Ava-Marie, was born on July 11 and lived in the hospital for a few days before her parents took her home. She died on July 22. Just 11 days of life.
Daniel, 31, told the Mirror: "We found her sick in a 12-week scan, but we decided to give her the best chance in life"
After Ava-Marie's death, Daniel said: "We feed her at 8 o'clock every morning. During these 11 days, I went out for the first time to buy some new clothes for her. The partner texted me and said, "She doesn't look like Too good."
"Although we know that she is terminally ill, she is still shocked. I have not made death very easy."
The couple also had two other children - Harry, 4 years old, and Sophia, 2 years old. After the death of Ava-Marie, they decided to set up a charity to keep the baby's memory.
The Ava Marie Foundation aims to support parents and families who have experienced miscarriage, stillbirth or child death, providing them with a memory box for free.
Inside the box are two identical teddy bears - one for children and one for the family - a hand-cast kit and inkless paper for printing baby's hands and footprints.