Cystic fibrosis sufferers
A BRAVE CF eight year old has urged the public to support the Cystic Fibrosis Trust by backing our festive campaign.
And donning a seasonal jumper Jacob Hart, of Norwich, revealed his Christmas wish – for all fellow UK sufferers to get lifesaving drugs.
This year we have already helped secure currently available life-saving drugs Orkambi and Symkevi, although they only work for half the sufferers.
Now we are demanding future wonder drug Trikafta be made available on the NHS when licensed next year.
Jacob said: “I want to grow up and be like my friends, playing football and going to school without taking lots of medicine. I need Trikafta now as the other medicines like Orkambi don’t work on me.”
He was diagnosed with the genetic condition as a baby despite there being no known history of CF in his father Andy or mother Lucy’s families.
The couple, who also have CF-free son Harrison, seven, have faced “difficult times” and feared taking Jacob outside in case he caught coughs and infections.
Andy said: “Giving medication to an unwilling baby was also heartbreaking.We lived in fear of a phone call from the hospital about cough swab results.
“The treatment seemed daunting initially but very quickly became part of our routine. Our main worries were how long.What if?We were scared to ask too many questions for fear of an answer we couldn’t handle.”
Jacob was first diagnosed with lung bacterial infection pseudomonas when he was just eight months-old.
Lucy said: “Antibiotics and nebulisers were introduced and they were tough times. This infection has returned twice more. Jacob was also recently diagnosed with bone condition Perthes Disease.
“We’ve always encouraged physical activities for his CF but he has now been restricted as to what he can do for at least two years.
“A wheelchair is needed for walks of over 10 minutes.”
Jacob is not suitable for any current CF drugs like Orkambi or Symkevi but he would be able to take upcoming newVertex pill Trikafta.
He boasts a loving, happy personality and is passionate about helping other CF-ers – so was keen to support the CF Trust’s Christmas campaign.
His family host a gala ball every year to fundraise for the CF Trust as they see fundraising “as a kind of therapy”.
Andy said: “We want people to raise as much money and awareness for CF and to make Jacob’s life as enjoyable and special as possible. Since Jacob’s been diagnosed we’ve seen the hard work of the CF Trust.”