James’ Story

Stories like this show exactly why Trikafta needs to be funded urgently. Mark Butler MPVertex Pharmaceuticals, please list Trikafta without delay so kids like James can spend less time in hospital and more time being a healthy kid.

‘Currently on our third day in hospital with DIOS (distal intestinal obstruction syndrome) which is a common complication of cystic fibrosis. This happened frequently when James was younger but hasn’t occurred for a while, though when a DIOS occurs there is a significantly higher risk of it happening again which is the case for us.

DIOS is very painful for the child and causes a big sore distended belly, lots of vomiting, being unable to go to the toilet and unable to eat. James was unable to eat or drink for two days which is far from ideal as those with CF require at least 2.5 times the calories of a healthy individual.

Thankfully this time he won’t need a surgery to correct it, though that is sometimes needed with a DIOS and has happened in the past with James. Instead he has had large volumes of strong laxatives pumped into his tummy via nasogastric tube which in itself is a very uncomfortable process.

Hoping and crossing everything for our government to fund Trikafta ASAP which will help normalise the cell function of the gut and lungs and reduce the likelihood of this happening again 🙏🏼🙏🏼🙏🏼 I don’t like posting publicly about James’ health complications but it’s really important that the powers that be understand the realities of life for the 500+ kids currently waiting for Trikafta.

Please please act quickly and fund Trikafta as a matter of urgency!’

Thanks Sophie for sharing your story we hope James feels better asap ♥️