THE family of a teenager with an extremely rare kidney disease are fighting for access to a crucial life-changing drug.

Mum Gemma Brownhill donated a kidney to her son Benjamin Morgan-Brownhill last November while he battled MPGN Type One, a condition where the immune system damages the kidney.

Just 10 weeks after the operation the disease returned, attacking the new kidney, and since then Miss Brownhill said her 18-year-old son has been on a "downward spiral".

In a further blow the family have twice been refused access to the drug eculizumab, something they were advised may have benefits for Mr Morgan-Brownhill.

The family are now seeking to raise £175,000 to fund a six month course of the drug.

Mum Gemma Brownhill believes the drug would drastically alter her son's life.

She said that her son had been through "a lot" since his initial diagnoses.

"He was incredibly ill and was later put on dialysis," said Miss Brownhill. "But, as the dialysis kept making him ill and stopped working, the only other option was for me to donate a kidney, which I did in November last year.

"He's just been on a downward spiral since 2013, it is so upsetting."

After the disease returned Mr Morgan-Brownhill, who is studying at Cardiff and Vale College, has been receiving weekly plasma changes, which "completely takes it out of him".

Miss Brownhill, 37, said: "It's not the best for an 18-year-old to be in and out of hospital on a regular basis. He'll never admit it but he's bound to be feeling very down with everything that is going on."

The family, who live in Rhoose, were told by nurses about a potential life-changing drug called eculizumab, which prevents the immune system from attacking the kidney, and applied to the indepedent patients funding request review for funding.

The family were rejected in January and then April, firstly because the drug is licensed only for sufferers of a different immune system condition called Atypical hemolytic uremic syndrome and secondly on safety grounds.

The mother-of-three said: "It's absolutely devastating news. The drug can completely change my son's life round - from being stuck in hospital and dependent to an independent person.

"We are now doing a lot of fundraising to reach our target of £175,000."

Currently, about £40,000 has been raised, which included £10,356 being donated on the family's GoFundMe page.

Anyone who wishes to donate can visit https://www.gofundme.com/apriceonalife

The Cardiff and Vale Health Board have been asked for comment.