Baby Indi Gregory has tragically died after her life support was removed on Sunday.
The 8-month-old baby spent her final hours surrounded by her family in hospice care after being transferred from Queen's Medical Centre in Nottingham.
Her family lost successive appeals to keep her on life support and a desperate bid to be allowed to transfer her to Rome for experimental treatment that would have been fully funded by the Italian government.
In a high profile case that garnered international attention, the Italian government made an extraordinary intervention by granting her citizenship. This however failed to overturn the decision of the UK courts to side with doctors in the removal of her life support.
The family lost their final appeal on Friday, when senior judges said that her life support should be removed immediately and denied the family's wish to take her home.
A statement released by her devastated father, Dean Gregory, said that his daughter died at 1:45am on Monday and that she took her final breaths in the arms of mother, Claire.
"Claire and I are angry, heartbroken and ashamed," he said.
"The NHS and the courts not only took away her chance to live a longer life, but they also took away Indi's dignity to pass away in the family home where she belonged.
"They did succeed in taking Indi's body and dignity, but they can never take her soul.
"They tried to get rid of Indi without anybody knowing, but we made sure she would be remembered forever. I knew she was special from the day she was born."