This was something I dreamed of at birth when doctors told us to have her christened and say goodbye. She was born with three holes in the heart and elevated pulmonary pressure but her heart has more or less mended itself and we are looking forward to hopefully being discharged by the cardiac clinic next year. Saskia lives at home and is totally dependent, having no mobility, no speech and the inability to eat orally, necessitating feed and fluid in-take through a gastrostomy tube.

She also has a permanent in-dwelling urethral catheter as her bladder function is impaired but she is, however, in very good health. Her worst problem is her scoliosis which, although deteriorating has not yet had any impact on her lung function. Rod surgery may have to be considered but is not something I am particularly keen on. Saskia attends school and has done since she was two.   

She loves school , particularly all the boys and the male teachers, and loves to go to Shed @The Park (outreach project from Chickenshed theatre) one night a week. Saskia loves music, sensory lights, magazines and boys, especially boy bands. Looking at herself in the mirror is another favourite pastime and going to the cinema so she can sing over the actors! She hates being cold or ignored.

Saskia is a well travelled young lady, and when she has problems we access the expertise in America as she is the oldest surviving child in the UK. In the States families have surviving children in their 20s and we had the privilege of knowing a young lady from Utah who was 36 when she passed away!  

Saskia’s dream would be to meet McFLy!