Man has spent 17 years battling to save his Children from an incredibly rare genetic disease and find a reliable and approved treatment.

And eventually he did, in the form of an unusual product.

We killer Knicks Zeros Sons have what's called black bone disease, formerly known as Al Captain Yuria or a k U for short.

So aka you is an ultra rare genetic disease effects Roughly one person in half a million on it's due to a mutation in a gene, which means that patients can't break down a certain acid that accumulates in cartilage and bone and goes black, which is why it's called black bone disease.

And over the years that leads to severe joint deterioration, spinal problems, heart problems and intense pain.

Ciro's eldest son, Julian, was diagnosed as a baby, but symptoms can be delayed until the patient is an adult.

He's now 20 as a patient at the National Al Captain Nouria Center in Liverpool.

He has had early access to a weed killer derived drug called night is unknown.

Scientists knew United Simone should help prevent the damage but needed to prove it.

Using large scale clinical trials mhm, but with only 1000 known suffers worldwide, there was no help from big drug companies.

So 10 years ago, zero gave up his job to concentrate on the campaign.

He's raised millions of pounds.

The research did prove notice in own works, not only stopping symptoms developing but even reversing some of the damage done.

It has now been licensed by the European Medicines Agency on for the last three years while taking notice unknown, Julian has been symptom free.

If I wasn't on the drug, it could be that within the next 10 years it will likely within the next 10 years.

I would definitely feel the effects, Um, in my joints.

Uh, possibly my heart valves, um darkening or like dark spots in the eyes is just everywhere there's cartilage or anywhere that something called a Kronos ISS can form the A.