I have the privilege to fundraise for Muscular Distrophy UK again this year - this year my run will be entirely in memory of Tarnia.
I worked as Tarnia's carer since May 2017. I loved how every evening she would ask for me to cook for her, pasta being her favourite, and then she would chat with me while I was washing up, or she busied herself with colouring by numbers on her iPad. She was artistic and creative.
We had so many adventures together! Tarnia laughed her head off, being wheeled backwards in her chair all around Latitude Festival, after 'accessible' paths proved too challenging for the tiny front wheels of her wheelchair.
Tarnia was very calm when, during the trip to Southwold, she got locked in the disabled toilet, and it took us ages to find a guy with a radar key! She then continued to bring it up at every opportunity, shaking her head disapprovingly, but with a smile.
Tarnia had a wonderful sense of humour: despite her learning disabilities she had an amazing sense of irony, occasionally so on point she'd have the whole room in stitches. She cheekily mocked our quirky ways and picked on our habits - her powers of observation simply bewildering!
Above all, Tarnia was a FIGHTER. Always and every day, she pushed herself to be more, learn, Tarnia's superpower was her thirst for embracing life and new experiences (even if she never agreed to go into the pool). Tarnia knew she needed to use her muscles to prevent them from getting weaker. Tarnia would do her wheelchair exercises, concentrating and repeating: 'Legs, need legs, strong. Need arms, strong.' And I know that she fought till the end.
Tarnia died last December. She suffered from Muscular Distrophy, but died of chest infection. This has been a third chest infection, with 2 previous ones also necessitating admission to ICU in the hospital. Her condition, making Tarnia's muscles weaken with time, made it impossible for Tarnia to cough and clear secretions from her lungs. What would be a cold and a mild cough for us, was a devastating infection for her each time, with many traumatic medical procedures.
Tarnia was important to me. She was a wonderful person and I loved getting to know her and seeing her grow in confidence in the period of time I had known her. She called me her friend, and I will treasure that in my heart for ever.
There is no cure for Muscular Distrophy. The condition can be managed with medication and physiotherapy, and some people will live a long and rich life.
With continuing research, it may be possible to improve the management, and one day find a cure for this condition.
I hope you can help me fundraise on this occasion.
It won't make a difference to Tarnia's life. But she made a difference to mine, and now I, and you, can make a difference to someone else's.
Love to you all ❤️