Lisa Halliday and Tom Jones, from Carley Hill, were told their daughter Hope had a heart problem at their 20 week scan and she was transferred from Sunderland Royal Hospital to the Freeman in Newcastle shortly after her birth in May.
She was diagnosed with a series of heart conditions and underwent surgery at four weeks old, but the procedure did not help and she had to be fed through a tube throughout her life.
Search for Sunderland pensioner’s family after his death in hospital days after …
A number of strokes left her with sight problems and reduced movement on her left side.
She experienced seizures and was also diagnosed with cerebral palsy.
When her breathing deteriorated, Hope was put on a specialist breathing system and given open heart surgery to put in a pulmonary band.
That failed to work, with her only chance put down to a full heart repair, due in the New Year.
But Hope developed pneumonia in the autumn and while she managed to fight it off once, another bout affected her other side.
She died in her parents’ arms on Monday, December 14.
The seven-month-old was only able to meet her sisters Abigail, 13, and Holly, eight, twice, with the family facing additional restrictions due to the coronavirus pandemic.
She was laid to rest in a small ceremony in her home city surrounded by her loved ones.
Now devastated Lisa, 40, and Tom, 34, have started the Hope Jones Memorial Fund to help others in the region with children with heart, respiratory or neurological conditions.
They struggled with the financial demands of staying with their baby over such a period of time, but benefited from the Oliva Mae Foundation and The Family Fund, which helped with travel costs.
Tom, a self-employed taxi driver, said: “We wanted to set something up in her memory for other families in the same situation at the Freeman, RVI and Sunderland Royal.
“If we can help just one other family, it will be worth it. I don’t want Hope’s life and her dying to be in vain.”