THE parents of a little boy who is the only person in the world to suffer from Down's Syndrome and a rare form of cancer are desperately trying to raise £300,000 to help save his life.

Harvey Hext and his identical twin brother, Spencer, were born with Down's Syndrome.

The four-year-olds are among just a handful of identical twins in the country to have the condition. But Harvey has also been diagnosed with neuroblastoma, a cancer that attacks the nervous system.

The smiling youngster is the only child in the world with both conditions.

So far he has had more than 100 days of chemotherapy, an operation to remove a tumour the size of an orange from his stomach, and had to be kept inside a lead-lined room for a month for radiotherapy to try to kill the rest of his cancer.

But it is still with him, and the point could come where his parents Sarah and Dave have to send him to Germany or America for life-saving treatment. They have now launched the Harvey Hext Appeal to help raise the vital funds that could save him.

When the two boys were born on July 30, 2006, within 10 minutes medical staff told the couple that their twins had Down's Syndrome – one of only about six pairs in the country.

Mrs Hext said: "There was just shock. I was numb, but one thing that sticks with me is that I thought, 'let's just give them one name because it will be easier for them to remember'. It was a coping mechanism straight away.

"We were devastated, and that feeling of being overjoyed and deeply happy was taken away because of the Down's.

"People say it is almost like a bereavement, and you grieve for the child you should have had. But then you have to change and adapt and get used to the children you have got."

Mrs Hext's mother moved in to their Parsonage Lane home in Winford for four months to help, while her sisters and friends came to their aid.

Mr Hext, 41, an account administrator at an engineering firm, also took a year off work when the twins were one, and the family gradually began to get used to their new life.

Mrs Hext, 42, said: "We were shattered all the time, and you have this fear about what they are going to be like and that the rest of your life is going to be spent looking after your children.

"The boys have limited speech and use Makaton sign language, but other than that you can't really tell them apart from other children."

The twins started at Winford Primary School in 2009, and were just getting used to things when Mrs Hext noticed a problem with Harvey.

On June 23 last year doctors broke the awful news that Harvey had a tumour in his stomach – stage 4 neuroblastoma, a cancer that affects fewer than 100 children a year in the UK.

Tests showed the youngster had a solid tumour that was 8cm by 7cm – the size of an orange – that was pushing against his other organs.

Doctors said Harvey had a 20 per cent chance of survival, and that if he lived there was an 80 per cent chance he would relapse.

Harvey is the only documented case in the world of a child having Down's Syndrome and neuroblastoma.

Mrs Hext said: "It was absolutely devastating. Nobody can ever understand what it feels like until you are in that position. Your whole world falls apart.

"Every day when I wake up in the morning I think, 'Harvey has got cancer', and every night when I go to sleep I think, 'Harvey has got cancer'. Our whole world revolves around it."

For a second time the family rallied around to face a challenge.

Just weeks after the diagnosis Harvey started his first 70 days of chemotherapy. It made him sick and he lost his hair, and he had to get used to having two treatment lines put into his chest, which he nicknamed "Wiggles".

Mrs Hext said: "The doctors went through his treatment plan and told us that one of the side effects was that it could give him cancer in later life. What do you do?"

By October the treatment had done little, so Harvey went to London for 40 days of a different chemotherapy, which gave him dreadful ulcers.

Finally, on February 5, the tumour was removed in a 14-and-a-half hour operation – the longest day of Mrs Hext's life.

But not all the cancer was taken out, and part of it is still wrapped around his spine.

Harvey has had radiotherapy on the remaining tumour, and it could die off. But it could also develop.

Further chemotherapy has had to be abandoned, and today he will go to London for another month of radiotherapy, meaning he could have to celebrate his birthday in a sealed room. There could be a lifeline through treatment in Germany or America. But if the NHS cannot pay, this would cost the family about £300,000.

Mrs Hext said: "It is just an unimaginable amount, and on top of everything else the thought that money we haven't got could save him is hard.

"But if we have to sell our house we will – we will do anything to help him."

The family have launched the Harvey Hext Appeal to help raise the money, but for now they are concentrating on the little things.

On July 9 Mrs Hext and Olivia raised £350 through the Race for Life, and last Thursday Mr and Mrs Hext watched on with pride as their boys took part in a race at their school sports day.

Mrs Hext said: "Harvey is such a character and is a real comedian, and it helps that he doesn't know what is coming next. Spencer doesn't really understand, but I find it so hard for Olivia, because I don't have the time that I want to do things with her.

"I promised her before Harvey was diagnosed that I would take her to Lapland, and it breaks my heart that I can't. She is eight and should be enjoying life.

"I have lost a year of Olivia and Spencer's lives, and there is nothing we can do to change that but do our best for them. I don't want them to look back at this as a sad time."

To help, visit www.bmycharity. com/HarveyHextAppeal.