6-year-old loses battle against rare heart condition
A BRAVE six-year-old has lost her battle with an incurable heart condition.
Tamiya Wright's mother Maria has paid tribute to her daughter's courage in coping with her illness.
The youngster was diagnosed with restrictive cardiomyopathy – where the movement of the heart is restricted and does not pump blood properly – in November 2009.
The option of a transplant was ruled out, meaning that there was little that could be done for the Knowle West youngster.
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Doctors initially told Miss Wright that Tamiya would probably live about two years after diagnosis but the brave little girl fought her condition for a third year, passing away at Charlton Farm on February 10. Her funeral was due to take place today.
Tamiya's health started deteriorating in October and it got to the point where she could not walk or sit up.
"But she still wanted to do everything, she would find a way," her mum said.
Tamiya spent the last week of her life at Charlton Farm children's hospice in Wraxall with her mother, and Miss Wright has been staying there since.
"On her last day we had gone in the Jacuzzi and afterwards she turned around and said 'I want to walk back to my bed' – she hadn't been able to walk for some time but she was determined – and they helped her, holding her up a little bit so she could walk to her bed."
Miss Wright said she was incredibly proud of the way her daughter fought her illness.
"Tamiya could have chosen to lie down and let her condition take her – it was her choice to feel sorry for herself. But Tamiya Louise Wright chose to live," she said. "Right up until the last minute she was still fighting and wanted to survive.
"She tried her very best to deal with things and get on with it and I am very proud of her."
During Tamiya's last week at Charlton Farm – where she had spent time over the last three years – one of the members of staff arranged for a special day where the little girl was visited by Sleeping Beauty and Cinderella.
Miss Wright said: "She has changed me so much. I wouldn't be who I am if it wasn't for her and I am not going to let her pain and her life be for nothing.
"I feel so lucky to have had her in my life.
"She said to me 'you live, be strong, be brave and you fight' and that is on the order of service for her funeral."
Miss Wright said that despite all the hospital appointments Tamiya loved going into Bristol Children's Hospital and that they were lucky to have been referred to the cardiologist who was responsible for her care.
She was also thankful for the different services that supported her and her daughter during her short life.
Miss Wright said: "Palliative care, disability social services, Lifetime, Jessie May, Oasis Academy Connaught Primary School, Bristol Children's Hospital – from A&E to outpatients and ward 32, and Charlton Farm.
"These people all provided us with all the support we needed and went above and beyond to give her longer than expected.
"I feel all the services, especially the hospital, kept her going. She went on a year longer than was expected and helped me give her the best life I could.
"I don't know how we would have done it without their support. They are angels."
Miss Wright said that she would not have wanted to be anywhere but Charlton Farm following her daughter's death and appreciated that as well as the support from the care team, she has been able to spend time with her daughter at the hospice.
"It means I can go and see her and it's a chance for me to gather together the thoughts and memories I can keep for the rest of my life," she said. "This place is beyond perfect."