Parents’ anguish at ‘cost on girl’s life’
A COUPLE brought forward their wedding to make sure their 17-month-old cystic fibrosis-stricken toddler Esme could be there.
The heartbreaking decision by Claire and Mark Ives highlighted the fears of every parent with a CF child.
The couple of Attleborough, near Norfolk, have seen their child struggle with her health since diagnosis as a baby. So last August mum Claire, 34, and dad Mark, 30 – who had no immediate plans to marry – tied the knot.
Yesterday Claire said: “We were determined Esme would be there with the three of us, me, Mark and her sister Willow. It’s not that Esme has been particularly ill but we just never know what is ahead. It is a horrible feeling.
“She is a wonderful girl and doesn’t complain when we give her her daily therapies, tablets and physiotherapy. Of course she has known this all her life – it’s tragic that she knows no different.”
While Esme is too young to take Orkambi – patients must be at least two years old – her family are desperate for it to be available in five months time.
Primary school teacher mum Claire and horticultural agent Mark were shocked when she was diagnosed as a newborn. But praising the NHS, the couple said they were immediately given support.
Claire said: “As a parent you cannot understand how people can place a cost on Esme’s life. Orkambi could help her soon – and the sooner she gets it the quicker we can stop the clock on any future deterioration of her lungs.”