“WE don’t know how long we’ve got with our son.”

The family of a nine-year-old York boy are raising awareness of the rare genetic disorder that’s blighting his life.

Sally Mitcham’s son, Danny, was diagnosed with mucopolysaccharidosis type II, more commonly known as Hunter Syndrome at just three years old.

As he was growing up, Danny was referred to a paediatrician after doctors agreed that he wasn’t developing as a boy of his age should.

Later tests would tragically find that Danny had the most severe form of the disease meaning he also had the worst possible outlook.

Danny received treatment after his diagnosis but his family knew that it wouldn’t be able to slow the disease’s progression.

Sally said: “Just like that, everything is ripped away. All hopes and dreams for your child are gone. Having to tell Danny’s dad that the worst-case scenario is that we lose our son at 10 years old was the worst thing I’ve ever had to do.”

Danny, who goes to Hob Moor Oaks School in Acomb lives in York with Sally, his father Craig and his brother Joseph. Sally works as a full time carer whilst Craig works in IT.

Charities, Action Medical Research and LifeArc are jointly supporting a team at the University of Manchester who are investigating this which could one day transform the outlook for boys like Danny.

Unfortunately, this new therapy will come too late for Danny which Sally knows.

She said: “We will lose our beautiful boy to Hunter Syndrome, but any new hope is worth fighting for so that families in the future don’t have to feel that the bottom is dropping out of their world.

“It is so amazing to think that another family in the future might be told that their child has Hunter Syndrome, but there is a new treatment that could stop the progression completely and give them a normal life. That would just be so amazing.

“Danny lives in the moment and enjoys whatever he has. I’d love to have my little trouble back in full force, because I know what this calm after the storm is leading to.”

Sally offered advice to families in a situation similar to her own.

She said: “Reach out to other families through social media or patient groups. Living with a rare disease diagnosis can feel so isolating, it feels as if not-one can know what it is you are going through, so to meet others who know exactly what it is like is a huge relief.

“Other than that, try to live in the moment. Enjoy the five minutes snuggling on the sofa, enjoy the outings, the sunshine. Meditation has really helped me with that too.”

People can watch more about Danny’s story here and can read more about supporting families living with rare diseases here.