Shirley Tilney has paid tribute to her daughter Kirsty, who died at 38 after living with Down's syndrome, describing her as "beautiful on the outside but also on the inside."
A life that touched many
Kirsty's health had declined over several years, and the impact of lockdown had been difficult. However, she touched the lives of many, with friends Sandy and James Lawrence launching a crowdfunding page to support the family and thanking Shirley for sharing her daughter's journey.
Kirsty was born in Shotley Bridge in 1988 and moved to Gateshead around a decade ago. Shirley told ChronicleLive: "Kirsty Louise was a beautiful young lady that I was honoured to call my daughter. She was not only beautiful on the outside but also on the inside."
"She brought light into the darkest room. When you might be going through difficulties she would just cuddle you and it truly made you feel so much better."
Move to Gateshead
Shirley explained that they had moved to Gateshead due to issues with Kirsty's healthcare elsewhere. She added: "We moved to a place that we knew nothing of and knew no one: but the only certainty was that Kirsty's life mattered to the doctors and nurses in local hospitals."
Sadly, after several years, Kirsty's health began to decline, and she began to receive palliative care support. Then came the Covid-19 lockdowns.
Lockdown's mixed impact
Shirley added: "Lockdown happening was good for us! Kirsty got less infections, she actually thrived. Sometimes something bad happened and gave us a reality check but Kirsty always proved us wrong."
But lockdown also impacted Kirsty's wider wellbeing, as "she became scared to leave the flat," Shirley said. The grieving mum added: "It was heart-breaking as Kirsty had loved to go to the theatre, visit the Metrocentre or Newcastle. The last two years, Kirsty's health continued to decline. She bounced back but each time she changed - she was getting tired."
Care and support
Shirley said that Kirsty's care team never gave up on her and always looked at how to keep her well and maximise quality of life. But she said this time was exceptionally hard as a parent, adding: "The helplessness is overwhelming, you have to smile even when your heart is breaking."
Shirley explained that a Facebook support group for families called Future of Down's had been a vital outlet, especially in the most difficult of times. She added that when Kirsty's health continued to decline, her final days had been handled with love. She also paid tribute to support including from nurses, Kirsty's palliative care consultant, and the wider team. She added: "When I say these people were family, they loved Kirsty so much and it broke them, when Kirsty passed."
Celebration of life
Also present were Kirsty's younger sister Emma Jane and her partner, Shirley said. As for the funeral, which took place at Seven Penny Meadow near Consett, she added: "The celebration of Kirsty's life was amazing, it truly represented Kirsty. The team did everything the way I imagined it to be."
"It wasn't the conventional funeral. Kirsty loved life and there was never darkness!" She said the funeral celebration had featured bright colours, photos, decorations, stone painting and even bubble guns and pizza. She added that Kirsty was now at last free of medication.
Shirley said: "Emma lost her sister and I lost my daughter: our lives will never be the same but I would do it all over again in a second because all of the hard stuff was nothing compared to the joy and love that Kirsty brought."
