Heartbreaking letter from Alex, 11, to Prime Minister for deal to be done
ANGRY 11-year-old Alex Darkin is so fed-up with the Orkambi NHS row that she took a letter to 10 Downing Street demanding action.
Schoolgirl Alex was diagnosed with cystic fibrosis at birth but refuses to let it restrict her fun and hobbies.
So, last year she and her protective little brother Harrison, nine, decided to take action and write and hand-deliver letters to Prime Minister Theresa May.
Mother Emma was “so proud” of her campaigning children, but is furious neither received a reply and that their heartfelt letters were both cruelly ignored.
Alex’s letter read: “My name is Alex, I’m 11 years old. I have a condition called cystic fibrosis.
“It’s very annoying and boring. “Cystic fibrosis means I’ve got to go into hospital a lot and have a lot of medication. “There’s a drug called Orkambi.
“If I had it I wouldn’t have to go to hospital as often and I would live a longer and happier life.
“It makes me sad when I have to go to hospital because I hate needles and I miss my family and friends.”
Meanwhile, Harrison penned: “I miss Alex and my mummy when they have to go to hospital, it makes me feel sad.”
Since Alex, of Prestwich, Greater Manchester, started high school last September she has had three emergency hospital admissions due to DIOS (distal intestinal obstruction syndrome).
DIOS occurs when a cystic fibrosis sufferer’s bowel becomes blocked.
Before the age of two, Alex had already had four bowel operations.
As well as bowel issues, she also has irreversible lung damage, from a condition known as bronchiectasis in both lungs.
For three-and-a-half years the youngster needed regular intravenous antibiotics, where the medicine is pumped via a tube straight into a vein.
Mother Emma, 37, said: “Despite her constant hospital admissions and rigorous routine of six nebulisers a day, physio twice-a-day and a cocktail of drugs, she has an enormous energy for life.
“She loves to be around people and spends all her spare time doing sports, including playing football, cheerleading and trampolining.
“Cystic fibrosis doesn’t only impact on Alex’s life, it has a huge impact on the whole family.
“I had to give up my career in IT more than five years ago to help keep on top of all of Alex’s medication. Meanwhile, Harrison suffers from anxiety, especially when Alex is admitted into hospital as an emergency.
“We know that Orkambi and the pipeline of drugs will not cure Alex and may not fix the damage already done.
“But they give us hope for a happier future and slow down the progressive nature of CF, giving our beautiful daughter a longer and better quality of life.”
Emma, married to bricklayer Steve, 44, added: “It is heartbreaking knowing these drugs are out there but due to the cost they are being denied to our children.
“Young lives are being lost and this could all be prevented if a deal could be done.”