Sometimes it's okay if the only thing you did today is breathe
Levi Haines was born fighting: “From a baby he had to deal with so much. The hospital was a second home for us, he must have visited all the departments,” explains his mother, Tracey Tookey. Tracey has continued his fight, deciding to pursue a career as a Health Care Assistant and work on the wards where Levi spent so much of his time.
Now, in recognition of her fundraising Tracey has been given the Sixty-Five Roses award. Caroline Whitton, Lead Cystic Fibrosis Nurse says, “We give this award to one of our amazing supporters and fundraisers. This year we felt we should honour Tracey’s commitment to raising awareness of cystic fibrosis, and the generous donations received following Levi’s celebration of life”.
Born with cystic fibrosis, Levi’s life and that of his family, brothers, Joshua, Tom, and Zach, became intricately woven with hospital visits.
At only 6 months old, Levi fought Meningococcal Meningitis, Tracey worked out that in his final year (2022) Levi spent over 240 consecutive days as an inpatient in Derriford. “The hospital and his team became more than just doctors and nurses to us; they became our friends”.
Throughout numerous stays, staff would do everything they could to make the hospital environment more like home. The team rely on donations to pay for items such as fans, televisions, game consoles, and anything else they can think of to help patients through. “They had so much input, they made things better for us,” explains Tracey.
At 19, Levi’s doctors told him he would not reach his 21st birthday. Speaking at the time, Levi said, “When I was a child having cystic fibrosis was fine, but as you get older, teenage rebellion kicks in and you want to stay out with your friends. I wasn’t very compliant. The doctors told me I needed to turn it around.”
By February 2015, Levi’s lung function had dipped to 12%, it became clear that only a double lung transplant would save him. During the wait time, Tracey updated Levi’s Facebook page, saying they "needed a miracle" - and just hours later, the call came to say a match had been found.
"We had a family hug, and all cried for the donor, and the sadness that family must have felt.” Tracey remembers. As Levi was being wheeled down for the 10-hour operation, the Emergency Department staff lined the corridors, clapping for him.
He spent a single day in the ICU afterwards, five days post-transplant he was tackling the stairs. In just a few days Levi’s lung function rose to 43%. He became one of the fastest patients to be discharged from the unit.
Unfortunately, Levi’s battles were not over. In 2021, he was diagnosed with non-Hodgkin’s lymphoma. Once again, he fought through gruelling rounds of chemotherapy. “I never heard him complain once,” says Tracey, “rather me than you Mum,” was what he would say to me.
Although Levi’s health improved, initially defying expectations, his body was tired. With more frequent hospital admissions and his symptoms increasingly serious, Levi decided himself that it was time to move to St Luke’s Hospice. On 10 January 2023, Levi died.
“For 30 years Levi has been centre of our world. Cystic fibrosis dictated the choices we made in life. I cared for my son and based everything around him. How do you move on from that?” says Tracey. “Levi always said I should be a nurse, I’ve spent years giving him his feeds, physio, and medications. The trust has supported our family for the past 30 years and I want to thank every department, ward and staff member that has helped along the way, they are truly remarkable. Derriford has been like a home to us, and I can never pay them back. I know he would be so proud. I can hear him saying, “Go and do it Mum!” He was so thoughtful and just a remarkable unique man that I am proud to call my son.”
"If we ever had a bad day, we used to say to each other 'Sometimes it's okay if the only thing you did today is breathe’,” says Tracey. "I know he would be proud. I can hear him saying, ‘Go and do it Mum!’ He was so thoughtful and just a remarkable unique man that I am so proud to call my son.”
