Battle that will drain any parent

CAMPAIGNING Gemma Weir has told how a parent’s life is consumed by their CF child.

When her daughter Ivy, now five, was diagnosed as a baby, Gemma felt “fear, panic, shock, worry, dread and grief”.

That has been replaced with a steely determination to win Orkambi for Ivy and other CF sufferers in the UK. She convinced Stephen Morgan, her Portsmouth MP, to invite his Commons colleagues to breath through a straw to experience what CF sufferers feel – and the “strawfie” challenge went viral.

Gemma, 35, said: “All a parent wants to do is keep their child loved, safe and healthy.

“But when you have no control over that health you feel useless.

“Fund raising was the only way I felt I was helping.”

Gemma, husband Matthew, 35, and son Charlie, 10, spend a lot of their time campaigning. This has included setting up a petition for Orkambi to be made available on the NHS, which Ivy helped deliver to Downing Street.

Gemma said: “I’m drained. I should be taking my daughter and son to the park and spending time with my family.

“I’m doing this for Ivy and all others with CF, who deserve the right to live and to breathe, so I can look her in the eye and know I’ve done everything possible to help her lead a better life.

“It makes us even more angry and determined when we see the Orkambi situation resolved in other countries, but not here.”