Dear Mr Barclay,

I’ve now agonisingly waited for a lifesaving new liver for two whole years – years stolen from me by illness and distress.

I am losing hope. Overwhelming fatigue means maintaining any routine is impossible let alone suffering the constant nausea, pain and cramps.

Some days I haven’t even the strength to brush my teeth.

Without your help I fear I’m blindly waiting for an organ that will never come. I feel my chance of life slipping away. A new liver would give me an opportunity to live as I’ve never yet done.

I was diagnosed with CF and AATD when just three days old. Unfortunately, they have badly affected my body and I’ve suffered terribly my whole life. In 2020, with the fantastic help of the Daily

Express campaign, I received Kaftrio. This drug caused remarkable improvement of my CF lung symptoms and has made it possible for me to be listed for a liver transplant.

But the National Liver Offering Scheme uses algorithms to decide who gets any new lifesaving liver. This can be a good way of identifying the greatest. whose need is However, it fails when patients have rare diseases. and I need you to meet me help spark changes so the urgency for people with rare liver diseases like mine are better recognised.

Young people on the liver transplant list are currently waiting significantly longer than older individuals to create so-called

‘equality’. But all that means is I’m just as likely to die aged 30 waiting for a liver as a 60-year-old.

I’ve been told that the transplant is likely to resolve the crippling illnesses making my life a daily struggle but if you wait too long on the list, you’re left too ill to transplant. I have already waited so long that I now have a potentially cancerous lesion on my liver. This is why I need your help before it’s too late.

Yours sincerely, Sarah Meredith