Toddler finally receives drug which could add 25 years to her life
PUBLISHED: 17:46 30 January 2020 | UPDATED: 17:46 30 January 2020
A two-year-old girl with cystic fibrosis has received her first parcel containing a drug which could add an extra 25 years to her life.
Esme Ives and her family are celebrating the milestone after a long battle to get the drug Orkambi made available on the NHS.
In October, the family were given the news that Esme could be one of 5,000 patients to access the drug.
The first box of the Orkambi medicine arrive at the family's home in Attleborough on Monday.
Mrs Ives said the drug could allow Esme to live into her 60s, allowing her to have her own family.
The couple were told when Esme was born in 2017 that she could live into her early 40s.
Mrs Ives, a teacher, said: "As a family we can plan for our future. It will give her a better quality of life and she will live longer.
"Where before she was told 39 or 40 was her life expectancy she may live into her 60s and have her own children, maybe grandchildren."
Big sister Willow, four, was also excited by the news telling her sister her 'special medicine' had arrived.
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There is currently no cure for cystic fibrosis (CF). People with the condition may need to take different medicines everyday to help digest food and treat and prevent lung problems, as well as undergo daily physiotherapy, antibiotics, and take enzyme tablets with food.
Orkambi is said to slow decline in lung function - the most common cause of death for people with cystic fibrosis.
CF causes sticky mucus to build up in the lungs, increasing the chances of serious lung infections and breathing problems
It is caused by a defective gene, and one in 25 people carry the faulty DNA.
The family said the drug would allow them to relax after years of contemplating the possibility of Esme dying before them.
Mrs Ives, a teacher, said: "We are looking forward to relaxing. We haven't got any major plans.
"Originally we knew there was a high chance she could die before us.
"Now it's a little bit more positive, that we will die before her.
"No-one wants to think about that you could bury your child."
"She is amazing with all her medicines, she accepts this is her life."