"Everything we do is for Levi," says Tracey Tookey, mother of Levi Haines, after receiving the 65 Roses award by UHP's Cystic Fibrosis team.  

 

Tracey Tookey, alongside her husband and one of her sons, Zach, recently visited Derriford to receive the 65 Roses Award. The award was presented to her by the UHP Cystic Fibrosis team in thanks for her dedication to spreading awareness about Cystic Fibrosis (CF) and for raising almost £2,000 for Plymouth Hospitals Charity’s Cystic Fibrosis Fund. All of this was done in memory of her loving son, Levi. It was an afternoon of remembrance, gratitude, and celebration of Levi's life and the legacy he leaves behind. 

 

Levi was diagnosed with Cystic Fibrosis at six weeks old, and from that moment on, he became a familiar and friendly face to the staff at Derriford. Tracey explained that over the years, “the hospital and his team became more than just doctors and nurses to us; they became our friends."  

 

In 2014, after so many requests for updates from friends, family, and hospital staff, Tracey set up a Facebook page named 'Levi's page'. It became a platform documenting Levi's CF journey, sharing both the good and bad days. It also became a focus for raising awareness about CF, helping to emphasise the importance of registering to be an organ donor. 

 

At 19, Levi was told he would not reach his 21st birthday. Despite this, he remained hopeful while waiting for a double lung transplant that would change his life.  

 

On 1st March 2015, Tracey finally updated the Facebook page, saying, ‘We got our miracle!!!’ The hospital had found a match, and Levi had a double lung transplant at Harefield Hospital in London. "Levi was given the chance to experience what it felt like to breathe easy."   

 

After six years of living with his new lungs, Levi started to feel unwell again. He was later diagnosed with non-Hodgkin's lymphoma. Following this heartbreaking news, Levi underwent chemotherapy, but it was unsuccessful. As his symptoms worsened, he made the difficult decision to move to St Luke's Hospice, where he sadly passed away on 10th January, 2023. 

 

Levi's fb page captured over 600 followers from all over the world, providing support to other families who are going through a similar journey. "The impact that page had; we could never have imagined [...] I'm amazed at how many people we have reached, and I really do hope that sharing our experience helps spread the word about Cystic Fibrosis and organ donation. Too many beautiful lives are lost to this terrible disease," she explained.  

 

Tracey hopes to turn the fb page into a book one day, sharing Levi's story far and wide. 

 

At the award presentation, the Cystic Fibrosis team gathered to applaud Tracey and her family for their efforts in raising awareness and funds, which will go towards buying new equipment for adult services.  

 

Caroline Whitton, Lead Cystic Fibrosis Nurse (Adults), presented Tracey with the 65 Roses certificate and a pot of beautiful outdoor yellow roses called Golden Wishes. These roses will be placed in the patio area next to Levi's Christmas tree in Tracey's family home.  

 

Caroline said, “We give the award to acknowledge our amazing CF supporters and fundraisers. Despite a demanding home life and caring for Levi, Tracey dedicated time to raising awareness about CF and organ donation. The funds dedicated in Levi’s memory will benefit people with CF whose care is provided by UHP, and we are so grateful to Tracey and her family. Her strength and resilience are an inspiration to us all, and we know Levi would be very proud of his Mum.” 

 

Tracey qualified as a Healthcare Assistant recently and works on one of the UHP wards that supported her family. "Derriford has been like a home to us, and I can never pay them back. It's so important to me that the Trust is recognised for how truly remarkable they have been."